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Save the Date!
The Congenital CMV Foundation is sponsoring the 2008 Congenital CMV Conference on November 5 -7, 2008 (CCC ’08) at the Centers for Disease Control (CDC) Harkin Global Communications Center in Atlanta, Georgia. Co-sponsored by the CDC and Public Health Foundation Enterprises (PHFE), CCC' 08 will examine current topics in Congenital CMV, including vaccine initiatives, diagnosis of maternal, fetal, and newborn infection, and preventative treatments. This public forum will be conducted by families, daycare providers and medical professionals and policy makers to address issues of awareness, prevention, development of a registry for surveillance, standards of care for children with birth defects, and personal activism.
Click here to view the conference agenda.
Listen to the Centers for Disease Control and Prevention's Podcasts, Staying Healthy When a Baby’s on the Way:
A Cup of Health with CDC
A Minute of Health with CDC
Friday, February 22, 2008
Worldwide CMV Links for parents
Carmen Burton, Founder of the Congenital CMV Association (UK), compiled this valuable list of worldwide CMV links for parents:Congenital CMV Association (UK)
Established over 20 years ago and run on a voluntary basis by the parents of CMV children. We can put parents in touch with others. We distribute a regular newsletter and send out any other useful or interesting information. We spread Awareness and help professionals with research etc. Website: http://www.cmvsupport.org/ Email: mailto:support@cmvsupport.org?subject=Inquiry or congenitalcmv.association@ntlworld.com
European Congenital Cytomegalovirus Initiative:
The European Congenital CMV Initiative (E.C.C.I.) is a network of professionals based throughout Europe with a united interest in congenital cytomegalovirus (CMV) infection. The group is composed of virologists, epidemiologists, immunologists, obstetricians and paediatricians whose aim is to promote awareness of congenital CMV and support and encourage research initiatives into this important infection. Information on latest research, info etc.
Website: http://www.ecci.ac.uk/
National Congenital CMV Disease Registry – Baylor (USA but includes parents from all over the world):
The registry is a research program working to learn more about those children born with symptoms of congenital CMV disease. Aside from research, the National Congenital CMV Disease Registry provides an outreach program consisting of this web site, written educational material, and an annual newsletter, CMV Updates for the purpose of educating health care professionals, families, and all others interested in learning more about congenital CMV disease. Additionally, we established and maintain a parent support network as a forum where parents of children congenitally infected with CMV can contact other parents dealing with the challenges of raising a child born with CMV. Parents from all over the world including UK.
Website: www.bcm.tmc.edu/pedi/infect/cmv
Congenital Cytomegalovirus Foundation (USA):
Preventing congenital CMV through Awareness, an American website hosted by professionals and parents together. A wealth of information, features, advice, links etc
Website: http://www.congenitalcmv.org/home.htm
Stop CMV (USA--but includes parents from all over the world):
Set up by the mum of CMV twins, this website offers a wealth of information and support materials. Get info and links, buy stop CMV t-shirts, download posters, web banners etc. Become a stop CMV rep – they would love to spread out to the rest of world. A very active Awareness Group and website. Website: http://www.stopcmv.com/
CMV Kids:
A new site coming soon, so watch this space:
Website: http://stop:cmvkids.com
CMV Listserv – members from all over the world!
“Our mailing list is for parents and caregivers of children with congenital CMV, therapists, doctors and nurses who work with our children, those with CMV, and those researching ways to conquer cCMV. Our email list provides a forum to learn from each other, share our frustrations and rejoice in our triumphs...to know there is someone out there who "really knows" what we are going through. Parent to parent contact – lots of answers to all those stupid questions from parents who have been there, done that! Sign up, or search the archives at
Website: http://listserv.syr.edu/archives/cmv.html
CMV Blog (USA):
Hosted by a mum whose CMV daughter died when she was 16, you can share your story, participate in parental discussion groups and find additional resources on CMV prevention. Website: http://congenitalcmv.blogspot.com/
Anything But A Dog:
A book written by Lisa Saunders (see blog above) about her CMV daughter and their dog, a sad, but funny, heart moving true story of Elizabeth and her dog. A great way to spread CMV Awareness. (A donation from every sale will be made to the UK CMV Association)Website: to http://www.unlimitedpublishing.com/dog
Photo caption: Elizabeth (age 15) and big sister Jackie (18) on the boardwalk at night--our last family vacation before Elizabeth died during a seizures in 2006.
Tuesday, February 19, 2008
CONTAGIOUS LIVING
Abigail Hannaford-Ricardi is the mother of two children with multiple cognative, physical and medical special needs. She was asked to give the sermon at the First Unitarian Church of Worcester, Massachusetts on April 15, 2007. Her remarks, inspired by her experiences with her son Terry, who has congential CMV disease,are reprinted here.
FIRST READING:
Psalm 139 (13-16)
For thou didst form my inward parts,
Thou didst knit me together in my mother’s womb.
I praise thee for thou art fearful and wonderful.
Wonderful are thy works!
Thou knowest me right well,
My frame was not hidden from thee,
When I was being made in secret,
Intricately wrought in the depth of the earth,
Thy eyes beheld my unformed substance:
In thy book were written, every one of them,
The days that were formed for me
When as yet there was none of them.
SECOND READING:
He is a Miracle
I’m going to tell you about my son Terry today, and hopefully you don’t feel like you’ve just sat down for a 24 hour bus ride next to the granny with the wallet photos. Rest assured I don’t carry a wallet - not enough room for photos. That’s why I’ve got 12 volumes of scrapbooks about my kids. This second reading is from a scrapbook page I made two Thanksgivings ago. Terry is my hero, and I don’t say that lightly. There is no living human being whom I admire more than Terry. I’d like to share with you my top ten list of why he is a miracle and my hero.
1. HE IS ALIVE: Terry was born to a homeless, IV drug user who received no pre-natal care. Since doctors didn’t know the umbilical cord was wrapped around his neck, it was a vaginal delivery. He underwent withdrawal from cocaine and opiates (which is lethal to 3-5% of newborns if untreated). Terry was born with a cytomegalovirus infection, and worst of all he was one of only 10% with the infection who has the actual congenital CMV disease (similar to Rubella syndrome). 20% of children born with the disease die and 90% of those who survive are severely disabled. Terry suffered damage to his brain, heart, liver, blood, eyes and ears. Despite being full term, Terry spent six weeks in the neonatal ICU, and was then discharged into a medical foster home and provided with 40-70 hours per week of home nursing care.
Today Terry is an alive and active teenager.
2. HE CAN EAT: When Terry moved into that foster home, a suction machine and feeding pump went with him. Failure to thrive and malnutrition are some of the leading causes of death in congenital CMV disease. Despite advancing the caloric density of his formula and feeding him through a tube Terry had poor weight gain. When he came to us at age three and a half he was still on an all liquid diet. He was diagnosed with severe failure to thrive and at his four year old physical he weighed just 25 pounds (in the 0% and below the 50% for an 18 month old).
Today Terry’s weight and height are in the normal range. He has a voracious appetite. If any of you don’t know whom Terry is, just look around during coffee hour for the person eating the most cookies and I guarantee you that will be my son.
3. HE CAN SEE: When Terry was in the neonatal unit he was noted to have eye shaking. Later he would be diagnosed with scarring and incomplete closure of the eyes, outward eye turn, missing nerve tissue connecting the eyes to the brain, and suspected damage to the vision processing areas of the brain. Those of you who knew us when we first started coming here will remember that Terry used to have to touch vocal cords in order to identify people.
Today Terry can identify people in photos and read alphabet letters just ¼ inch high. He is a miracle.
4. HE CAN COMMUNICATE: Congenital CMV is the leading cause of non-hereditary deafness in children. Over 65% of kids with the disease develop hearing loss. Terry is deaf. Some of the only vibrations Terry can respond to are below those tested on standard audiogram charts, beyond the pain threshold and at a level that would cause deafness in a hearing person. Terry also has autism, which greatly impacts his ability to use language.
Today Terry has a sign language vocabulary of about 500 words and also uses a pictorial communication system to communicate with family, friends and staff.
5. HE CAN BREATHE FREELY: CMV can invade the lungs and cause a fatal pneumonia in both infants with the congenital disease and in adults who are immune compromised. Terry was in respiratory distress when he was born. He was diagnosed with a floppiness and collapse of the main airway and many other problems including asthma. Sinusitis, bronchitis, pneumonia -Terry averaged 13 respiratory infections per year.
Today the frequency and severity of Terry’s respiratory infections and asthma attacks have greatly decreased and he is usually full of energy. He was just seven years old the first time he climbed Mt. Wachusett with this church
6. HE CAN WALK: That may seem obvious, but then again, breathing, seeing and eating probably did too. 25-39% of children born with CMV disease have abnormal motor function. Terry’s central nervous system was not spared. His tone was so abnormal that the hospital called in an occupational therapist the day he was born. When he was just two months old specialists wrote that he most likely had a mixed, quadriplegic form of cerebral palsy. At age three and a half he could not walk, could not sit without supporting himself, and tired of holding his head up.
Today Terry continues to receive occupational and physical therapy several times a week, but he can walk, swing, dance and climb. He is a miracle.
7. HE CAN THINK: Congenital CMV is the most common infectious cause of mental retardation and a leading cause overall. Terry had an abnormally small head circumference and seizures. Just before turning eight he tested at the 16-18 month old level and was diagnosed as severely mentally retarded.
Today Terry’s head size is normal he hasn’t had a seizure in over ten years, and his cognitive skills test in the six year old range. He can read several words, write his name, count, match and sort items. His sense of direction and memory for routes far surpasses mine and he likes to take apart and rebuild mechanical devices.
8. HE CAN WORK: For several years Terry required total care for dressing feeding and toileting. He was difficult to reach, withdrawing from the world to self-stim, rock, spin, and laugh to himself.
Today Terry loves work tasks. At school he has had mail delivery, stocking and recycling jobs, as well as assisting with shopping, simple cooking and laundry chores. He has been working in the school greenhouse potting plants and making horticulture crafts, works in the seat weaving shop and restocks the snack wall and soda machine in the school snack shop. He has become very competitive with his classmates, is proud of his accomplishments, loves to receive praise, and can’t wait to spend the money he earns.
9. HE IS STRONG: Terry has a genetic immune deficiency disease called hypogammaglobulinemia, an abnormally low concentration of the major component (85%) of all serum antibodies, leaving him susceptible to recurrent infections, scarring of the lungs, a painful form of arthritis, digestive problems and production of autoantibodies that attack his own tissues and blood cells. This condition is life threatening to people who are otherwise “normal,” it is bad news when a child with multiple disabilities has it. He used to miss more than 80 days of school a year due to illness.
Today Terry takes antibiotics every day, as he has for the past seven years. Since starting treatment, the changes in his health, stamina, physical growth and learning have been remarkable. He is stronger than he has ever been. He is a miracle.
10. HE HAS FRIENDS: For a long time Terry was more interested in wheels, shoes and door hinges than he was in any human being. Terry has autism with sensory motor integration disorder, obsessive/compulsive behavior and an attention deficit disorder.
Today, wheels and shoes can still distract Terry, but he has very genuine attachments to his friends. Whether it is sledding with Nathan, cooking with John, working with Ben, eating lunch with Joel, going to the YMCA with Katie or sleeping over at Sara’s house, Terry is involved. He asks for his friends when they are sick, and states that he wants to see them during school vacations. One of his very best friends is James – Terry has become an attentive and doting big brother!
SERMON: CONTAGIOUS LIVING
I want to begin by telling you my qualifications for being here today: I sent Reverend Merritt’s husband a card. In other words, I am not qualified. This just proves the old saying that “no good deed goes unpunished.” That’s right. After today the Merritt household will wonder why they don’t receive any more personal mail.
As much as I like to brag about my kids, I’m thinking that sermons should pertain to every day life, and most of you probably don’t live with someone whose physical brain has been ravaged by a virus. However, we all know and live with the metaphorical viruses that ravage our brains. I’m talking about the viruses that infect us with feelings of worthlessness, shame, anger, fear and despair. Learning how CMV was passed to Terry and how it affected him, has helped me to learn how we pass emotional viruses onto each other and how they affect us. Here is my second top ten list:
1. ONLY DON’T KNOW: This is actually a Buddhist saying. I’m not going to ask a show of hands on how many of you have cytomegalovirus. I’ll tell you. 50% of us in the US have it by the time we are 30, 90% of us have it by the time we die. So, if you don’t have it the people sitting on either side of you do. In talking about Terry, I risk him being discriminated against – so let me tell you upfront, you can’t get CMV from him. You get the virus from someone who has a new infection – and most people with one have no symptoms at all (although 10% have flu or cold like symptoms). You can’t tell by looking at someone. Avoiding children with multiple handicaps will not protect you.
This holds true for emotional viruses as well. You can’t avoid getting hurt by avoiding people with green skin. Yet our brains are wired to protect us. If we touch fire, we learn very quickly that we shouldn’t stick our hands into glowing red and yellow. Our brains want to use the same system to protect us from emotional hurt. I think this is where some prejudices originate. You can’t tell by looks.
2. YOU ALWAYS HURT THE ONES YOU LOVE: There are three times in life when a person is most likely to get a CMV infection. The first is as an infant or toddler from other drooling infants and toddlers. The second is as a teenager from that new special other you are kissing. The third time is when you are the parent of an infant or toddler. The population at greatest risk for having a child with congenital CMV is mothers of children below the age of 3. Junior comes home from daycare, where other toddlers are wearing diapers, mouthing toys, drooling, and sneezing. Mom, who wouldn’t wipe the nose, change the diaper, clean the drool, kiss away the tears, or finish the food of a strangers child, will do all those things for her own child. Or, if she’s pregnant and being hyper careful, maybe her partner is doing all those things.- and then her partner gets the virus, kisses mom and she gets it and mom passes it to her unborn baby. Did you notice, it all comes from friends or family?
Emotional viruses work the same way. I can be nice to most people most of the time. I can have endless patience for other people’s children, but the people closest to me get to see me when I’m being mean and impatient. The most hurtful things I’ve ever said, the ones I’ve regretted the most, I’ve said to my husband. Now if a mere acquaintance says something hurtful to you, it’s easy to shrug it off. That person doesn’t know you! However, if the person you love most, the one you’ve trusted with your most personal feelings says something hurtful, it cuts you to the bone. The people we love most can hurt us the most. Therefore to protect ourselves from future pain we should all avoid letting anyone get close to us…NO! Don’t do that.
3. MOST VULNERABLE =MOST HURT: I told you that the vast majority of people don’t have any symptoms from their CMV infection. However, in people who are immune compromised, such as those who are undergoing cancer treatments, have had organ transplants or are HIV positive, CMV can quickly lead to blindness, liver failure or a fatal pneumonia. CMV is an opportunistic virus. In a developing fetus, all the major systems can be damaged.
Likewise, emotional viruses are most damaging to the most vulnerable. Yet, it is this group that is most often the recipient of such viruses: The nerdy kid; the geeky guy; the over-weight housewife; the forgetful senior citizen. Emotional viruses are opportunistic. And here is the rub, while most of us would not blame someone for a physical ill, we do blame people for their emotional ills. “Get over it.” “She’s overly emotional, anyway!” “He needs to grow a thicker skin.” When we cause emotional hurts, sometimes instead of being sympathetic, we get defensive. We don’t always know who is most vulnerable. One out of every 100 babies born in the US has a CMV infection, but 90% of them will have no symptoms at birth and 75% never develop any symptoms. Yet 10% of those newborns will have severe, life threatening disease. Why are some more vulnerable and some unaffected? We don’t know.
4. DON’T JUDGE: According to the March of Dimes, congenital CMV leads to 8,000 permanent disabilities in the US every year. (By the way, that’s 2,000 more than Down syndrome). Epidemiologists know this from studies that test every baby born in select hospitals across the US. However, normally, newborns are not routinely tested for CMV, and unless the test is done within the first three weeks of life, a positive result is meaningless because the child could have been exposed after birth. The vast majority of congenital CMV cases are never diagnosed. Every year thousands of parents have children who have deafness, blindness, cerebral palsy, cognitive impairment, and/or epilepsy, and never know that CMV was the cause. Often the disabilities are blamed on something that was also caused by the CMV, such as the premature birth. As an adoptive mom, it’s hard for me to understand, but I can tell you that mothers of children with disabilities blame themselves. The guilt is huge. Sadly, often, their spouses, family and friends will also think, “She must have done something wrong during that pregnancy.”
Obsessive/compulsive disorder used to be considered a result of “maladaptive coping of past conflicts, abuse and anxiety” requiring long-term psychotherapy. Attention deficit/hyperactivity disorder used to be attributed to “bad parenting,” “willful defiance,” and “moral defectiveness.” (These definitions are all out of old textbooks, by the way). Autism for many years was thought to be caused by “maternal ambivalence” towards the child. We now know that these each have a biological basis. Why do I mention these conditions today? Because congenital CMV is associated with all three conditions, and my son has been diagnosed with all three. Thirty years ago, you would all have KNOWN that I was a terrible mother. The textbooks said so.
Being judged, especially misjudged, hurts. I always like to think I know stuff and I’m forever realizing that I don’t have a clue. I’m not going to tell you, “Don’t judge,” because, to be honest, I find myself judging people and their behaviors regularly. But we should all TRY not to judge others.
5. HURT GROWS AND SPREADS: Someone sneezes and a tiny particle is passed to another person, where it multiplies, spreads to the bloodstream, passes through the placenta and grows in a fetus, potentially damaging every developing part: liver, lungs, heart, GI tract, eyes, ears, brain… Not just the brain as the thinking organ, but everything it controls – muscles, breathing, sleep cycle, temperature regulation, puberty. Congenital CMV can cause tooth enamel defects, orthopedic problems and hernias. All this from one tiny little microbe.
Emotional viruses are the same – one small insult can ripple and magnify and spread. This is especially true with gossip. Once something leaves your mouth, whether in a germ filled sneeze or hurt filled words, you can’t take it back or control where it goes.
6. TREAT OR REAP: There is no cure for congenital CMV, but the sooner it’s identified, the sooner it can be treated, and the sooner you treat, the less damage it causes.
As an example, CMV is a leading cause of deafness. 65% of those born with the disease develop hearing loss, and once the loss starts it almost always progresses to the severe to profound level in the affected ear or ears. The majority of these kids are born hearing and pass the newborn hearing screen. However, by the second birthday, deafness has often set in. Because most cases of congenital CMV go undiagnosed, the hearing loss is unexpected and often not discovered until the child enters school. Now consider that the success of every intervention –hearing aides, sign language, speech therapy, cochlear implants, etc. - depends greatly on how early it can begin – when the developing language center of the brain is most accessible. Today there is an antiviral treatment that has been shown to stop or significantly lessen hearing loss in newborns with the disease. (It can also stop or reverse the major CMV killers too –liver failure, gastritis, anemia and pneumonia). But there is no opportunity to give it if the virus isn’t diagnosed.
Not surprisingly, the sooner emotional viruses are recognized and treated, the less the damage. I think a lot of lawsuits could be avoided if people learned to listen and say “I’m sorry.” Too often we let anger, guilt and fear get in the way, or we hope problems will just go away if we don’t say anything – much like parents of a disabled child first hope, “He’ll grow out of it.” Situations that could have been addressed. resolved and forgotten, linger and fester and mushroom until the losses are severe and irreversible.
7. POP GOES THE WEASLE: CMV stays in your body for life, but after the initial infection the immune system keeps it in check. This is why, without treatment it can be life threatening to those who are immune compromised. In times of stress the virus can reactivate. This is what happened to Terry’s birth mother. She was ill from the drug use, a Hepatitis B infection and probable HIV infection, had a severe CMV reactivation and passed the virus onto Terry. I have to tell you that kids born with CMV disease are not the hardiest bunch. Just when we think things are going smoothly we get a shock. Four years ago at age 13, Ronda was a lot like Terry, until the day she walked into a wall and it was discovered that the virus had reactivated in her eyes leaving her totally blind. Last year the virus reactivated in Ronda’s brain and she died at age 16. Sam is 11 and still with us, but two years ago the virus reactivated in his heart and lungs. This past winter he coded four times.
I want to read you the words of a parent written nine years after his premature daughter lived for 20 minutes and then died:
…the tragedy with Elise. It changed my life forever. I haven’t been the same since it affected me in a way I never felt possible. I am filled with so much hate, hate towards God and unimaginable emptiness it seems like every time we do something fun I think about how Elise wasn’t here to share it with us and I go right back to anger.
The family, friends and neighbors of this parent didn’t recognize his grief. They saw him as a steady worker, churchgoer, and devoted husband and father, yet this man shot ten girls in an Amish schoolhouse. We’ve all heard about the person who goes on a rampage in a post office, restaurant or school, but hidden anguish surfaces all the time on a much smaller scale in everyday life. I’m someone who hates confrontations, so I tend to swallow grief and praise myself for “not making issues out of ant hills” – except the ants are still there and to my embarrassment, I find that I tend to dredge them all up when I hit my breaking point.
8. KNOWLEDGE = POWER: Prior to today, how many of you can remember ever hearing about CMV? Well, in September of 2005 the Worcester Telegram and Gazette carried an article about an Italian study of congenital CMV. They offered hyperimmune globulin to pregnant women who tested positive for having a new CMV infection. In the study the drug cut the rate of mother-to-child transmission of CMV to just 3 %. In contrast, 50 % of the infected mothers who opted not to receive the treatment passed on the CMV to their unborn. The treatment is considered very safe and no adverse effects have been noted. Prevention of potentially severe birth defects.- this was great news! Guess how many American women have benefited from this treatment in the past 1 ½ years? I’ll give you a clue. 40,000 babies are born CMV positive in the U.S. every year. The answer? I don’t know of a single case (although I do know of a few U.S. women who received this treatment after ultrasounds and blood tests already showed fetal damage due to CMV).
Why is this? In Italy, where the study was done, all pregnant women are routinely tested for the virus several times during each pregnancy. The Italian public is more aware of the risks of congenital CMV. In the U.S. women are not routinely tested and most U.S. women have never heard of this virus. Most CMV infected babies are born to women who carefully followed their doctors’ advice. They got regular pre-natal care, took their vitamins with folic acid, quit smoking, avoided alcohol and over the counter medications, they didn’t handle raw meat or change the cat litter box, they left the house when the nursery was being painted and even stopped dying their hair. But, no one ever told them about precautions to avoid CMV, and now no one is telling women about a simple blood test and possible preventative treatment.
Knowledge gives us power to make changes. This is very true with preventing the spread of emotional viruses as well. I probably shouldn’t mention how ignorant I am…but I am, and I used to be much more clueless. When I was in college I picked up phrases like, “There goes the paddy wagon,” “Don’t be an Indian giver,” and “I think I’ve been gypped.” These phrases invaded my brain and I started spreading them around, completely ignorant of what ethnic slurs they were, until someone who really cared for me (my husband) pointed them out. Most of us don’t try to hurt others. Just like the parents in my CMV support group, we try to go out of our way to protect others from harm, but we have to be educated. We need to seek knowledge and to be open to change.
9. THERE IS ALWAYS HOPE: Specialists were not very hopeful when Terry was born, and they weren’t very hopeful 3 ½ years later when he came to live with us, and yet, as I shared with you, he far surpassed expectations. He is a miracle.
There are probably people in each of your lives that you just don’t expect much of. Now I’m not saying to surround yourself with people who make you miserable, but keep yourself open to the thought that people can change. Don’t avoid joining a committee you are interested in because you don’t think you can work with a particular member. Don’t assume someone can’t do something, just because they never have. People will surprise you. I’m very surprised to be here today. Barbara took a chance asking me to give a sermon. I’m a private person, and a fearful public speaker. This just goes to show that as bad as my “preaching” skills are, I’m even worse at saying “no.”
10. GOOD IS CONTAGIOUS: It’s hard not to smile when you see someone smiling, and it’s hard not to feel better when you are smiling. Scientific studies are now actually proving this. We can spread good viruses. I mentioned earlier that Terry has a condition called hypogammaglobulinemia. (That’s one word, 21 letters long, by the way). One of the treatments for that condition is a four hour monthly IV of gammaglobulin. This blood product is taken from the blood of 10,000 donors. You need that many to ensure that the recipient receives antibodies to all the bugs currently circulating. That to me is an amazing thing – so many people giving something that is then pooled together to support one individual. And, because gammaglobulin only lives for 20 to 30 days, the treatment needs to be repeated every 3 to 4 weeks.
When our younger son James had congestive heart failure and was awaiting his second open-heart surgery, people of this congregation pooled together to support us. There were days in which we felt that we were capsizing, when your actions buoyed us. And before your treatment could wear off, we would get another infusion, another call, card, visit or hot meal. Those repeated treatments sustained us until we landed back on dry ground. Thank you.
May you go out and spread the viruses of love, hope and joy. Be as contagious as possible and infect as many people as you can.
FIRST READING:
Psalm 139 (13-16)
For thou didst form my inward parts,
Thou didst knit me together in my mother’s womb.
I praise thee for thou art fearful and wonderful.
Wonderful are thy works!
Thou knowest me right well,
My frame was not hidden from thee,
When I was being made in secret,
Intricately wrought in the depth of the earth,
Thy eyes beheld my unformed substance:
In thy book were written, every one of them,
The days that were formed for me
When as yet there was none of them.
SECOND READING:
He is a Miracle
I’m going to tell you about my son Terry today, and hopefully you don’t feel like you’ve just sat down for a 24 hour bus ride next to the granny with the wallet photos. Rest assured I don’t carry a wallet - not enough room for photos. That’s why I’ve got 12 volumes of scrapbooks about my kids. This second reading is from a scrapbook page I made two Thanksgivings ago. Terry is my hero, and I don’t say that lightly. There is no living human being whom I admire more than Terry. I’d like to share with you my top ten list of why he is a miracle and my hero.
1. HE IS ALIVE: Terry was born to a homeless, IV drug user who received no pre-natal care. Since doctors didn’t know the umbilical cord was wrapped around his neck, it was a vaginal delivery. He underwent withdrawal from cocaine and opiates (which is lethal to 3-5% of newborns if untreated). Terry was born with a cytomegalovirus infection, and worst of all he was one of only 10% with the infection who has the actual congenital CMV disease (similar to Rubella syndrome). 20% of children born with the disease die and 90% of those who survive are severely disabled. Terry suffered damage to his brain, heart, liver, blood, eyes and ears. Despite being full term, Terry spent six weeks in the neonatal ICU, and was then discharged into a medical foster home and provided with 40-70 hours per week of home nursing care.
Today Terry is an alive and active teenager.
2. HE CAN EAT: When Terry moved into that foster home, a suction machine and feeding pump went with him. Failure to thrive and malnutrition are some of the leading causes of death in congenital CMV disease. Despite advancing the caloric density of his formula and feeding him through a tube Terry had poor weight gain. When he came to us at age three and a half he was still on an all liquid diet. He was diagnosed with severe failure to thrive and at his four year old physical he weighed just 25 pounds (in the 0% and below the 50% for an 18 month old).
Today Terry’s weight and height are in the normal range. He has a voracious appetite. If any of you don’t know whom Terry is, just look around during coffee hour for the person eating the most cookies and I guarantee you that will be my son.
3. HE CAN SEE: When Terry was in the neonatal unit he was noted to have eye shaking. Later he would be diagnosed with scarring and incomplete closure of the eyes, outward eye turn, missing nerve tissue connecting the eyes to the brain, and suspected damage to the vision processing areas of the brain. Those of you who knew us when we first started coming here will remember that Terry used to have to touch vocal cords in order to identify people.
Today Terry can identify people in photos and read alphabet letters just ¼ inch high. He is a miracle.
4. HE CAN COMMUNICATE: Congenital CMV is the leading cause of non-hereditary deafness in children. Over 65% of kids with the disease develop hearing loss. Terry is deaf. Some of the only vibrations Terry can respond to are below those tested on standard audiogram charts, beyond the pain threshold and at a level that would cause deafness in a hearing person. Terry also has autism, which greatly impacts his ability to use language.
Today Terry has a sign language vocabulary of about 500 words and also uses a pictorial communication system to communicate with family, friends and staff.
5. HE CAN BREATHE FREELY: CMV can invade the lungs and cause a fatal pneumonia in both infants with the congenital disease and in adults who are immune compromised. Terry was in respiratory distress when he was born. He was diagnosed with a floppiness and collapse of the main airway and many other problems including asthma. Sinusitis, bronchitis, pneumonia -Terry averaged 13 respiratory infections per year.
Today the frequency and severity of Terry’s respiratory infections and asthma attacks have greatly decreased and he is usually full of energy. He was just seven years old the first time he climbed Mt. Wachusett with this church
6. HE CAN WALK: That may seem obvious, but then again, breathing, seeing and eating probably did too. 25-39% of children born with CMV disease have abnormal motor function. Terry’s central nervous system was not spared. His tone was so abnormal that the hospital called in an occupational therapist the day he was born. When he was just two months old specialists wrote that he most likely had a mixed, quadriplegic form of cerebral palsy. At age three and a half he could not walk, could not sit without supporting himself, and tired of holding his head up.
Today Terry continues to receive occupational and physical therapy several times a week, but he can walk, swing, dance and climb. He is a miracle.
7. HE CAN THINK: Congenital CMV is the most common infectious cause of mental retardation and a leading cause overall. Terry had an abnormally small head circumference and seizures. Just before turning eight he tested at the 16-18 month old level and was diagnosed as severely mentally retarded.
Today Terry’s head size is normal he hasn’t had a seizure in over ten years, and his cognitive skills test in the six year old range. He can read several words, write his name, count, match and sort items. His sense of direction and memory for routes far surpasses mine and he likes to take apart and rebuild mechanical devices.
8. HE CAN WORK: For several years Terry required total care for dressing feeding and toileting. He was difficult to reach, withdrawing from the world to self-stim, rock, spin, and laugh to himself.
Today Terry loves work tasks. At school he has had mail delivery, stocking and recycling jobs, as well as assisting with shopping, simple cooking and laundry chores. He has been working in the school greenhouse potting plants and making horticulture crafts, works in the seat weaving shop and restocks the snack wall and soda machine in the school snack shop. He has become very competitive with his classmates, is proud of his accomplishments, loves to receive praise, and can’t wait to spend the money he earns.
9. HE IS STRONG: Terry has a genetic immune deficiency disease called hypogammaglobulinemia, an abnormally low concentration of the major component (85%) of all serum antibodies, leaving him susceptible to recurrent infections, scarring of the lungs, a painful form of arthritis, digestive problems and production of autoantibodies that attack his own tissues and blood cells. This condition is life threatening to people who are otherwise “normal,” it is bad news when a child with multiple disabilities has it. He used to miss more than 80 days of school a year due to illness.
Today Terry takes antibiotics every day, as he has for the past seven years. Since starting treatment, the changes in his health, stamina, physical growth and learning have been remarkable. He is stronger than he has ever been. He is a miracle.
10. HE HAS FRIENDS: For a long time Terry was more interested in wheels, shoes and door hinges than he was in any human being. Terry has autism with sensory motor integration disorder, obsessive/compulsive behavior and an attention deficit disorder.
Today, wheels and shoes can still distract Terry, but he has very genuine attachments to his friends. Whether it is sledding with Nathan, cooking with John, working with Ben, eating lunch with Joel, going to the YMCA with Katie or sleeping over at Sara’s house, Terry is involved. He asks for his friends when they are sick, and states that he wants to see them during school vacations. One of his very best friends is James – Terry has become an attentive and doting big brother!
SERMON: CONTAGIOUS LIVING
I want to begin by telling you my qualifications for being here today: I sent Reverend Merritt’s husband a card. In other words, I am not qualified. This just proves the old saying that “no good deed goes unpunished.” That’s right. After today the Merritt household will wonder why they don’t receive any more personal mail.
As much as I like to brag about my kids, I’m thinking that sermons should pertain to every day life, and most of you probably don’t live with someone whose physical brain has been ravaged by a virus. However, we all know and live with the metaphorical viruses that ravage our brains. I’m talking about the viruses that infect us with feelings of worthlessness, shame, anger, fear and despair. Learning how CMV was passed to Terry and how it affected him, has helped me to learn how we pass emotional viruses onto each other and how they affect us. Here is my second top ten list:
1. ONLY DON’T KNOW: This is actually a Buddhist saying. I’m not going to ask a show of hands on how many of you have cytomegalovirus. I’ll tell you. 50% of us in the US have it by the time we are 30, 90% of us have it by the time we die. So, if you don’t have it the people sitting on either side of you do. In talking about Terry, I risk him being discriminated against – so let me tell you upfront, you can’t get CMV from him. You get the virus from someone who has a new infection – and most people with one have no symptoms at all (although 10% have flu or cold like symptoms). You can’t tell by looking at someone. Avoiding children with multiple handicaps will not protect you.
This holds true for emotional viruses as well. You can’t avoid getting hurt by avoiding people with green skin. Yet our brains are wired to protect us. If we touch fire, we learn very quickly that we shouldn’t stick our hands into glowing red and yellow. Our brains want to use the same system to protect us from emotional hurt. I think this is where some prejudices originate. You can’t tell by looks.
2. YOU ALWAYS HURT THE ONES YOU LOVE: There are three times in life when a person is most likely to get a CMV infection. The first is as an infant or toddler from other drooling infants and toddlers. The second is as a teenager from that new special other you are kissing. The third time is when you are the parent of an infant or toddler. The population at greatest risk for having a child with congenital CMV is mothers of children below the age of 3. Junior comes home from daycare, where other toddlers are wearing diapers, mouthing toys, drooling, and sneezing. Mom, who wouldn’t wipe the nose, change the diaper, clean the drool, kiss away the tears, or finish the food of a strangers child, will do all those things for her own child. Or, if she’s pregnant and being hyper careful, maybe her partner is doing all those things.- and then her partner gets the virus, kisses mom and she gets it and mom passes it to her unborn baby. Did you notice, it all comes from friends or family?
Emotional viruses work the same way. I can be nice to most people most of the time. I can have endless patience for other people’s children, but the people closest to me get to see me when I’m being mean and impatient. The most hurtful things I’ve ever said, the ones I’ve regretted the most, I’ve said to my husband. Now if a mere acquaintance says something hurtful to you, it’s easy to shrug it off. That person doesn’t know you! However, if the person you love most, the one you’ve trusted with your most personal feelings says something hurtful, it cuts you to the bone. The people we love most can hurt us the most. Therefore to protect ourselves from future pain we should all avoid letting anyone get close to us…NO! Don’t do that.
3. MOST VULNERABLE =MOST HURT: I told you that the vast majority of people don’t have any symptoms from their CMV infection. However, in people who are immune compromised, such as those who are undergoing cancer treatments, have had organ transplants or are HIV positive, CMV can quickly lead to blindness, liver failure or a fatal pneumonia. CMV is an opportunistic virus. In a developing fetus, all the major systems can be damaged.
Likewise, emotional viruses are most damaging to the most vulnerable. Yet, it is this group that is most often the recipient of such viruses: The nerdy kid; the geeky guy; the over-weight housewife; the forgetful senior citizen. Emotional viruses are opportunistic. And here is the rub, while most of us would not blame someone for a physical ill, we do blame people for their emotional ills. “Get over it.” “She’s overly emotional, anyway!” “He needs to grow a thicker skin.” When we cause emotional hurts, sometimes instead of being sympathetic, we get defensive. We don’t always know who is most vulnerable. One out of every 100 babies born in the US has a CMV infection, but 90% of them will have no symptoms at birth and 75% never develop any symptoms. Yet 10% of those newborns will have severe, life threatening disease. Why are some more vulnerable and some unaffected? We don’t know.
4. DON’T JUDGE: According to the March of Dimes, congenital CMV leads to 8,000 permanent disabilities in the US every year. (By the way, that’s 2,000 more than Down syndrome). Epidemiologists know this from studies that test every baby born in select hospitals across the US. However, normally, newborns are not routinely tested for CMV, and unless the test is done within the first three weeks of life, a positive result is meaningless because the child could have been exposed after birth. The vast majority of congenital CMV cases are never diagnosed. Every year thousands of parents have children who have deafness, blindness, cerebral palsy, cognitive impairment, and/or epilepsy, and never know that CMV was the cause. Often the disabilities are blamed on something that was also caused by the CMV, such as the premature birth. As an adoptive mom, it’s hard for me to understand, but I can tell you that mothers of children with disabilities blame themselves. The guilt is huge. Sadly, often, their spouses, family and friends will also think, “She must have done something wrong during that pregnancy.”
Obsessive/compulsive disorder used to be considered a result of “maladaptive coping of past conflicts, abuse and anxiety” requiring long-term psychotherapy. Attention deficit/hyperactivity disorder used to be attributed to “bad parenting,” “willful defiance,” and “moral defectiveness.” (These definitions are all out of old textbooks, by the way). Autism for many years was thought to be caused by “maternal ambivalence” towards the child. We now know that these each have a biological basis. Why do I mention these conditions today? Because congenital CMV is associated with all three conditions, and my son has been diagnosed with all three. Thirty years ago, you would all have KNOWN that I was a terrible mother. The textbooks said so.
Being judged, especially misjudged, hurts. I always like to think I know stuff and I’m forever realizing that I don’t have a clue. I’m not going to tell you, “Don’t judge,” because, to be honest, I find myself judging people and their behaviors regularly. But we should all TRY not to judge others.
5. HURT GROWS AND SPREADS: Someone sneezes and a tiny particle is passed to another person, where it multiplies, spreads to the bloodstream, passes through the placenta and grows in a fetus, potentially damaging every developing part: liver, lungs, heart, GI tract, eyes, ears, brain… Not just the brain as the thinking organ, but everything it controls – muscles, breathing, sleep cycle, temperature regulation, puberty. Congenital CMV can cause tooth enamel defects, orthopedic problems and hernias. All this from one tiny little microbe.
Emotional viruses are the same – one small insult can ripple and magnify and spread. This is especially true with gossip. Once something leaves your mouth, whether in a germ filled sneeze or hurt filled words, you can’t take it back or control where it goes.
6. TREAT OR REAP: There is no cure for congenital CMV, but the sooner it’s identified, the sooner it can be treated, and the sooner you treat, the less damage it causes.
As an example, CMV is a leading cause of deafness. 65% of those born with the disease develop hearing loss, and once the loss starts it almost always progresses to the severe to profound level in the affected ear or ears. The majority of these kids are born hearing and pass the newborn hearing screen. However, by the second birthday, deafness has often set in. Because most cases of congenital CMV go undiagnosed, the hearing loss is unexpected and often not discovered until the child enters school. Now consider that the success of every intervention –hearing aides, sign language, speech therapy, cochlear implants, etc. - depends greatly on how early it can begin – when the developing language center of the brain is most accessible. Today there is an antiviral treatment that has been shown to stop or significantly lessen hearing loss in newborns with the disease. (It can also stop or reverse the major CMV killers too –liver failure, gastritis, anemia and pneumonia). But there is no opportunity to give it if the virus isn’t diagnosed.
Not surprisingly, the sooner emotional viruses are recognized and treated, the less the damage. I think a lot of lawsuits could be avoided if people learned to listen and say “I’m sorry.” Too often we let anger, guilt and fear get in the way, or we hope problems will just go away if we don’t say anything – much like parents of a disabled child first hope, “He’ll grow out of it.” Situations that could have been addressed. resolved and forgotten, linger and fester and mushroom until the losses are severe and irreversible.
7. POP GOES THE WEASLE: CMV stays in your body for life, but after the initial infection the immune system keeps it in check. This is why, without treatment it can be life threatening to those who are immune compromised. In times of stress the virus can reactivate. This is what happened to Terry’s birth mother. She was ill from the drug use, a Hepatitis B infection and probable HIV infection, had a severe CMV reactivation and passed the virus onto Terry. I have to tell you that kids born with CMV disease are not the hardiest bunch. Just when we think things are going smoothly we get a shock. Four years ago at age 13, Ronda was a lot like Terry, until the day she walked into a wall and it was discovered that the virus had reactivated in her eyes leaving her totally blind. Last year the virus reactivated in Ronda’s brain and she died at age 16. Sam is 11 and still with us, but two years ago the virus reactivated in his heart and lungs. This past winter he coded four times.
I want to read you the words of a parent written nine years after his premature daughter lived for 20 minutes and then died:
…the tragedy with Elise. It changed my life forever. I haven’t been the same since it affected me in a way I never felt possible. I am filled with so much hate, hate towards God and unimaginable emptiness it seems like every time we do something fun I think about how Elise wasn’t here to share it with us and I go right back to anger.
The family, friends and neighbors of this parent didn’t recognize his grief. They saw him as a steady worker, churchgoer, and devoted husband and father, yet this man shot ten girls in an Amish schoolhouse. We’ve all heard about the person who goes on a rampage in a post office, restaurant or school, but hidden anguish surfaces all the time on a much smaller scale in everyday life. I’m someone who hates confrontations, so I tend to swallow grief and praise myself for “not making issues out of ant hills” – except the ants are still there and to my embarrassment, I find that I tend to dredge them all up when I hit my breaking point.
8. KNOWLEDGE = POWER: Prior to today, how many of you can remember ever hearing about CMV? Well, in September of 2005 the Worcester Telegram and Gazette carried an article about an Italian study of congenital CMV. They offered hyperimmune globulin to pregnant women who tested positive for having a new CMV infection. In the study the drug cut the rate of mother-to-child transmission of CMV to just 3 %. In contrast, 50 % of the infected mothers who opted not to receive the treatment passed on the CMV to their unborn. The treatment is considered very safe and no adverse effects have been noted. Prevention of potentially severe birth defects.- this was great news! Guess how many American women have benefited from this treatment in the past 1 ½ years? I’ll give you a clue. 40,000 babies are born CMV positive in the U.S. every year. The answer? I don’t know of a single case (although I do know of a few U.S. women who received this treatment after ultrasounds and blood tests already showed fetal damage due to CMV).
Why is this? In Italy, where the study was done, all pregnant women are routinely tested for the virus several times during each pregnancy. The Italian public is more aware of the risks of congenital CMV. In the U.S. women are not routinely tested and most U.S. women have never heard of this virus. Most CMV infected babies are born to women who carefully followed their doctors’ advice. They got regular pre-natal care, took their vitamins with folic acid, quit smoking, avoided alcohol and over the counter medications, they didn’t handle raw meat or change the cat litter box, they left the house when the nursery was being painted and even stopped dying their hair. But, no one ever told them about precautions to avoid CMV, and now no one is telling women about a simple blood test and possible preventative treatment.
Knowledge gives us power to make changes. This is very true with preventing the spread of emotional viruses as well. I probably shouldn’t mention how ignorant I am…but I am, and I used to be much more clueless. When I was in college I picked up phrases like, “There goes the paddy wagon,” “Don’t be an Indian giver,” and “I think I’ve been gypped.” These phrases invaded my brain and I started spreading them around, completely ignorant of what ethnic slurs they were, until someone who really cared for me (my husband) pointed them out. Most of us don’t try to hurt others. Just like the parents in my CMV support group, we try to go out of our way to protect others from harm, but we have to be educated. We need to seek knowledge and to be open to change.
9. THERE IS ALWAYS HOPE: Specialists were not very hopeful when Terry was born, and they weren’t very hopeful 3 ½ years later when he came to live with us, and yet, as I shared with you, he far surpassed expectations. He is a miracle.
There are probably people in each of your lives that you just don’t expect much of. Now I’m not saying to surround yourself with people who make you miserable, but keep yourself open to the thought that people can change. Don’t avoid joining a committee you are interested in because you don’t think you can work with a particular member. Don’t assume someone can’t do something, just because they never have. People will surprise you. I’m very surprised to be here today. Barbara took a chance asking me to give a sermon. I’m a private person, and a fearful public speaker. This just goes to show that as bad as my “preaching” skills are, I’m even worse at saying “no.”
10. GOOD IS CONTAGIOUS: It’s hard not to smile when you see someone smiling, and it’s hard not to feel better when you are smiling. Scientific studies are now actually proving this. We can spread good viruses. I mentioned earlier that Terry has a condition called hypogammaglobulinemia. (That’s one word, 21 letters long, by the way). One of the treatments for that condition is a four hour monthly IV of gammaglobulin. This blood product is taken from the blood of 10,000 donors. You need that many to ensure that the recipient receives antibodies to all the bugs currently circulating. That to me is an amazing thing – so many people giving something that is then pooled together to support one individual. And, because gammaglobulin only lives for 20 to 30 days, the treatment needs to be repeated every 3 to 4 weeks.
When our younger son James had congestive heart failure and was awaiting his second open-heart surgery, people of this congregation pooled together to support us. There were days in which we felt that we were capsizing, when your actions buoyed us. And before your treatment could wear off, we would get another infusion, another call, card, visit or hot meal. Those repeated treatments sustained us until we landed back on dry ground. Thank you.
May you go out and spread the viruses of love, hope and joy. Be as contagious as possible and infect as many people as you can.
Sunday, February 17, 2008
Protect unborn babies from CMV
How you can help protect unborn children from CMV:
1. Write a letter to the editor of your local papers and magazines (they like to publish letters by their readers). If you're really ambitious, try writing the national media as well. Change the following sample letter to the editor to relect your story and contact information:
[Your name]
[Your address and contact info]
Dear Editor:
Did you know that when a pregnant woman kisses a young child on the cheek, she is risking mental retardation and hearing loss for her unborn child? That daycare workers are also putting their unborn children at risk? Most people don't, and when I was pregnant with my [child's name], I didn't know either.
Potentially thousands of children a year could be spared life-threatening disabilities if pregnant women were simply warned to avoid the bodily fluids of young children. According to the Centers for Disease Control and Prevention (CDC), 1 in 750 babies are permanently disabled by congenital CMV. CMV is more common than Down syndrome and is the leading viral cause of mental retardation and hearing loss.
[mention how you are personally affected by CMV or are upset that you know of women of child bearing age who have never heard of it]
According to Drs. Cannon (of the CDC) and Davis in their article, "Washing Our Hands Of The Congenital Cytomegalovirus Disease Epidemic,” “Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV. Given the present state of knowledge, women deserve to be informed about how they can reduce their risk of CMV infection during pregnancy...by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic…The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV.” See www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Drs. Cannon and Davis believe that ob-gyns do not routinely warn their patients of the disease because they don't realize how prevalent it is--many are not born with the obvious symptoms--hearing loss and developmental delays may not be obvious at birth. To learn more about CMV, see the brochure found on the CDC Web site http://www.cdc.gov/cmv/
The CDC recommends that pregnant women avoid kissing young children on the mouth or cheek, sharing food, towels or utensils with them, and frequently washing their hands—especially after diaper changes (rubber gloves are not enough). The CMV Registry adds that toys must be washed with disinfectant.
To see a short story published about one child who suffered and died as a result of congenital CMV, visit: recordonline.com - The silent virus that silenced Elizabeth [or put a link to your own child's story]. Thank you for your consideration.
Sincerely,
[your name and contact information again]
Other ways to raise awareness:
1.Print out the brochure found on the CDC Web site and ask your doctors to post it in their waiting rooms. See Brochure on CMV - In English - en Español (In Spanish)
2. Donate to an organization that supports CMV research, disseminates information and provides a parent support group, contact the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv. If you would like to make a tax deductible donation to them, please make checks payable to CMV Research Fund.
3) Contact some of the following groups with CMV information. Perhaps they'll post in their newsletter/magazine and Web sites. Ask them to put CMV on the list that pregnant women should avoid. Ask them to tell doctors to warn pregnant women about CMV and how they can avoid it. Remind them it is the leading viral cause of mental retardation and hearing loss.
American College of Obstetricians and Gynecologists, www.acog.org409 12th St., S.W., PO Box 96920Washington, D.C. 20090-6920(202) 638-5577
March of Dimes, (914) 997-4488, www.marchofDimes.com
1275 Mamaroneck AvenueWhite Plains, NY 10605
MOPS, Mothers of Preschoolers. http://www.mops.org/
Search out other Internet groups that reach women of child-bearing age
4)Get on shows like "Montel Williams"
5)Write letters to representatives in Congress.
6)Take a leadership role in organizing parent groups. The Baylor parent group is the place to start.
7) Lobby organizations like the March of Dimes to encourage them to pay more attention and give more effort toward congenital CMV.
8)Join the CMV Foundation mailing list
Marti Perhach marti.perhach@gbs-intl.org, whose daugther Rose was stillborn as a result of Group B Strep infection, has given me many ideas such as: "Starting your own health observance month just for CMV (I’m not sure if you can do that as an individual) on the National Health Observance Calendar is the best free promotion. http://www.healthfinder.gov/library/nho/ . This page on the Jesse Cause website http://www.thejessecause.org/pages/awareness.html has some ideas. As to the Health Observance Calendar, you would need to have a website for them to refer to or materials to mail or that they can download. October is Pregnancy and Infant Loss Awareness Month in case that is a promotional tool you can use. It is not on the Health Obs. Calendar but is recognized by Compassionate Friends and the SIDS alliance. You can also start pregnancy board threads or contact women’s health websites. I sent the CMV info to a South African website where the moms are promoting Prenatal Infection month with us.
The CDC is putting together a website section and materials on prenatal infections that should be ready in the next few months. The American College of Nurses and Midwives were very receptive. Can you partner with the company that manufactures the CMV test to help get out the information? Ideally I would like to have a brochure in both the prenatal and postnatal gift bags that moms get although that’s a very expensive project—hopefully someday soon! I don’t know of any publishers unless you got a sponsor like Lysol (they sponsored a poster on the CDC website) or a medical company that does patient information (can’t think of any right now but there’s always literature at the doctors’/pharmacy.)Doctors need CME credits so maybe you could get a company to sponsor a lecture on CMV info and the doctor gets their continuing education credit.
Marti's group: ~Group B Strep International~ Group B Strep International was formed in April 2006 by John MacDonald and Marti Perhach who each lost a daughter to Group B strep (GBS). ...www.groupbstrepinternational.org/about.html
1. Write a letter to the editor of your local papers and magazines (they like to publish letters by their readers). If you're really ambitious, try writing the national media as well. Change the following sample letter to the editor to relect your story and contact information:
[Your name]
[Your address and contact info]
Dear Editor:
Did you know that when a pregnant woman kisses a young child on the cheek, she is risking mental retardation and hearing loss for her unborn child? That daycare workers are also putting their unborn children at risk? Most people don't, and when I was pregnant with my [child's name], I didn't know either.
Potentially thousands of children a year could be spared life-threatening disabilities if pregnant women were simply warned to avoid the bodily fluids of young children. According to the Centers for Disease Control and Prevention (CDC), 1 in 750 babies are permanently disabled by congenital CMV. CMV is more common than Down syndrome and is the leading viral cause of mental retardation and hearing loss.
[mention how you are personally affected by CMV or are upset that you know of women of child bearing age who have never heard of it]
According to Drs. Cannon (of the CDC) and Davis in their article, "Washing Our Hands Of The Congenital Cytomegalovirus Disease Epidemic,” “Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV. Given the present state of knowledge, women deserve to be informed about how they can reduce their risk of CMV infection during pregnancy...by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic…The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV.” See www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Drs. Cannon and Davis believe that ob-gyns do not routinely warn their patients of the disease because they don't realize how prevalent it is--many are not born with the obvious symptoms--hearing loss and developmental delays may not be obvious at birth. To learn more about CMV, see the brochure found on the CDC Web site http://www.cdc.gov/cmv/
The CDC recommends that pregnant women avoid kissing young children on the mouth or cheek, sharing food, towels or utensils with them, and frequently washing their hands—especially after diaper changes (rubber gloves are not enough). The CMV Registry adds that toys must be washed with disinfectant.
To see a short story published about one child who suffered and died as a result of congenital CMV, visit: recordonline.com - The silent virus that silenced Elizabeth [or put a link to your own child's story]. Thank you for your consideration.
Sincerely,
[your name and contact information again]
Other ways to raise awareness:
1.Print out the brochure found on the CDC Web site and ask your doctors to post it in their waiting rooms. See Brochure on CMV - In English - en Español (In Spanish)
2. Donate to an organization that supports CMV research, disseminates information and provides a parent support group, contact the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv. If you would like to make a tax deductible donation to them, please make checks payable to CMV Research Fund.
3) Contact some of the following groups with CMV information. Perhaps they'll post in their newsletter/magazine and Web sites. Ask them to put CMV on the list that pregnant women should avoid. Ask them to tell doctors to warn pregnant women about CMV and how they can avoid it. Remind them it is the leading viral cause of mental retardation and hearing loss.
American College of Obstetricians and Gynecologists, www.acog.org409 12th St., S.W., PO Box 96920Washington, D.C. 20090-6920(202) 638-5577
March of Dimes, (914) 997-4488, www.marchofDimes.com
1275 Mamaroneck AvenueWhite Plains, NY 10605
MOPS, Mothers of Preschoolers. http://www.mops.org/
Search out other Internet groups that reach women of child-bearing age
4)Get on shows like "Montel Williams"
5)Write letters to representatives in Congress.
6)Take a leadership role in organizing parent groups. The Baylor parent group is the place to start.
7) Lobby organizations like the March of Dimes to encourage them to pay more attention and give more effort toward congenital CMV.
8)Join the CMV Foundation mailing list
Marti Perhach marti.perhach@gbs-intl.org, whose daugther Rose was stillborn as a result of Group B Strep infection, has given me many ideas such as: "Starting your own health observance month just for CMV (I’m not sure if you can do that as an individual) on the National Health Observance Calendar is the best free promotion. http://www.healthfinder.gov/library/nho/ . This page on the Jesse Cause website http://www.thejessecause.org/pages/awareness.html has some ideas. As to the Health Observance Calendar, you would need to have a website for them to refer to or materials to mail or that they can download. October is Pregnancy and Infant Loss Awareness Month in case that is a promotional tool you can use. It is not on the Health Obs. Calendar but is recognized by Compassionate Friends and the SIDS alliance. You can also start pregnancy board threads or contact women’s health websites. I sent the CMV info to a South African website where the moms are promoting Prenatal Infection month with us.
The CDC is putting together a website section and materials on prenatal infections that should be ready in the next few months. The American College of Nurses and Midwives were very receptive. Can you partner with the company that manufactures the CMV test to help get out the information? Ideally I would like to have a brochure in both the prenatal and postnatal gift bags that moms get although that’s a very expensive project—hopefully someday soon! I don’t know of any publishers unless you got a sponsor like Lysol (they sponsored a poster on the CDC website) or a medical company that does patient information (can’t think of any right now but there’s always literature at the doctors’/pharmacy.)Doctors need CME credits so maybe you could get a company to sponsor a lecture on CMV info and the doctor gets their continuing education credit.
Marti's group: ~Group B Strep International~ Group B Strep International was formed in April 2006 by John MacDonald and Marti Perhach who each lost a daughter to Group B strep (GBS). ...www.groupbstrepinternational.org/about.html
Pregnant and you think you have contracted CMV?
If you are pregnant and find out you are infected with CMV, chances are your child will not be infected. But, here is one mother's understanding, Abby at terryjamesmom@VERIZON.NET, of what an infected pregant woman can do (in response to a woman who wrote to her):
First of all: Don't panic. Only 40-50% of women who test postive for a CMV during pregnancy actually pass it onto the baby. Then only 10% of those babies infected are born symptomatic (with another 10-15% who later develope more minor symptoms such as hearing loss and learning disabilities). So the odds are clearly on your baby's side. More good news: There are two types of treatment options available to you that were not available just a couple years ago. So when you read the posts on here please remember that most of our kids never had the chances your baby has. (Also I think we tend towards the more disabled outcome only because families with kids who have few CMV issues don't really need us long term, so don't judge prognosis based on us). 1. The most promising treatment right now is hyperimmune globulin. The product is called Cytogam in the U.S. and Cytoect in Europe. The U.S. expert is Dr Stuart Adler at Virginia Commonwealth University. His e-mail is sadler@hsc.vcu.edu and his telephone is (804)-828-1807. This is his life's work so he would be happy to talk to you or your doctors. In Europe the expert to contact is Dr Giovanni Nigro. (I'm sorry I don't have his contact info, but I'm sure if you do an internet search it will come up). In 2005 these doctors ran a breakthrough study in which they offered hyperimmune globulin to pregnant women who tested positive for having a new CMV infection. In the study the drug cut the transmission of CMV to just 3%. In contrast 50% of the infected mothers who opted not to receive the treatment passed on the CMV to their unborn. The treatment is considered safe and no adverse effects have been noted. 2. If you find out that your baby already has CMV you can still get the above treatment (it has also been shown to reduce the damage done). You may also want to consider antiviral treatment while pregnant (this is usually now the treatment for babies born symptomatic), but it has been used with pregnant women whose babies show damage on ultrasounds and then show remarkable improvement after the mom has been given the antiviral treatment. This option is not without risks to your health so you'll want to discuss it carefully if the need arises to consider it. 3. I also wanted to let you know that there is another good support group on Yahoo at cmvcpparentlink and we currently have a mom from Portugal who is 24 weeks pregnant and just diagnoses with a primary CMV infection. So if you are looking for someone to talk to who may be able to share where you are at, she might be a good contact. Hope this helps. Please keep us updated on your progress and we will keep you in our prayers. Hugs, Abby, Mom to Terry, born 7/11/92 - cCMV, profound bilateral hearing loss, complex vision loss (optic disc colobomas, optic nerve hypoplasia), severe mental retardation, autism, ADD, OCD, neuromuscular problems, primary immune deficiency disease (no IgA, low IgG), H/O severe failure to thrive (resolved), bilateral hernias (repared), congenital heart defects (pulmonary stenosis and ASD, both resolved) H/O myloclonic seizures (inactive since age 2) and great big brother to:James, born 4/9/01 - Down syndrome, tetrology of Fallot (multiple heart defects, has had two open heart and several cardiac cath surguries, needs more of both), failure to thrive, Celiac disease, GIRD, tracheal stenosis (narrow airway swells shut when irritated)and best smile this side of the universe!
First of all: Don't panic. Only 40-50% of women who test postive for a CMV during pregnancy actually pass it onto the baby. Then only 10% of those babies infected are born symptomatic (with another 10-15% who later develope more minor symptoms such as hearing loss and learning disabilities). So the odds are clearly on your baby's side. More good news: There are two types of treatment options available to you that were not available just a couple years ago. So when you read the posts on here please remember that most of our kids never had the chances your baby has. (Also I think we tend towards the more disabled outcome only because families with kids who have few CMV issues don't really need us long term, so don't judge prognosis based on us). 1. The most promising treatment right now is hyperimmune globulin. The product is called Cytogam in the U.S. and Cytoect in Europe. The U.S. expert is Dr Stuart Adler at Virginia Commonwealth University. His e-mail is sadler@hsc.vcu.edu and his telephone is (804)-828-1807. This is his life's work so he would be happy to talk to you or your doctors. In Europe the expert to contact is Dr Giovanni Nigro. (I'm sorry I don't have his contact info, but I'm sure if you do an internet search it will come up). In 2005 these doctors ran a breakthrough study in which they offered hyperimmune globulin to pregnant women who tested positive for having a new CMV infection. In the study the drug cut the transmission of CMV to just 3%. In contrast 50% of the infected mothers who opted not to receive the treatment passed on the CMV to their unborn. The treatment is considered safe and no adverse effects have been noted. 2. If you find out that your baby already has CMV you can still get the above treatment (it has also been shown to reduce the damage done). You may also want to consider antiviral treatment while pregnant (this is usually now the treatment for babies born symptomatic), but it has been used with pregnant women whose babies show damage on ultrasounds and then show remarkable improvement after the mom has been given the antiviral treatment. This option is not without risks to your health so you'll want to discuss it carefully if the need arises to consider it. 3. I also wanted to let you know that there is another good support group on Yahoo at cmvcpparentlink and we currently have a mom from Portugal who is 24 weeks pregnant and just diagnoses with a primary CMV infection. So if you are looking for someone to talk to who may be able to share where you are at, she might be a good contact. Hope this helps. Please keep us updated on your progress and we will keep you in our prayers. Hugs, Abby, Mom to Terry, born 7/11/92 - cCMV, profound bilateral hearing loss, complex vision loss (optic disc colobomas, optic nerve hypoplasia), severe mental retardation, autism, ADD, OCD, neuromuscular problems, primary immune deficiency disease (no IgA, low IgG), H/O severe failure to thrive (resolved), bilateral hernias (repared), congenital heart defects (pulmonary stenosis and ASD, both resolved) H/O myloclonic seizures (inactive since age 2) and great big brother to:James, born 4/9/01 - Down syndrome, tetrology of Fallot (multiple heart defects, has had two open heart and several cardiac cath surguries, needs more of both), failure to thrive, Celiac disease, GIRD, tracheal stenosis (narrow airway swells shut when irritated)and best smile this side of the universe!
Saturday, February 16, 2008
Fairy Tale inspired by the death of Elizabeth Saunders
THE WOODCUTTER’S TALE
by Richard W. Avazian (Elizabeth's grandfather wrote this after her death)Illustrated by Elizabeth's aunt, Marianne Greiner . Elizabeth died as a result of congenital CMV complications.
Once upon a time long, long ago in a far-away land lived Patrius, a woodcutter, and his wife Matilda. They had a 19-year-old daughter, Filia and a ten-year-old son Stefan.
It came to pass that the countryside was ravaged by sickness accompanied by high fever that caused many to perish. Stefan was stricken and shortly became very ill. The woodcutter summoned the old midwife, a gray-haired woman who also served as a doctor. “Patrius, Matilda, I am sorry to tell you that Stefan is beyond my help and must soon die.”
Struck speechless by this pronouncement, they heard the neighing and hoof beats of horses outside their cottage. Patrius went out to discover that the Princess in her royal coach had stopped. “I was returning to my castle when I heard your son was sick. Bring me to him.” Patrius led the Princess inside and she beheld the dying Stefan. “Let me take him home with me and I will heal him. However, I will keep him with me as I have no sons after four years of marriage.” Although it broke their hearts, Patrius and Matilda agreed for they knew it was best for Stefan.
The Princess herself picked Stefan up to carry him to the carriage. As soon as the Princess lifted him, Stefan started to look better. The Princess placed him in the coach seat opposite her and the coach drove off, leaving the couple waving goodbye with tear-stained faces.
Life was not the same in the little cottage, although the family seemed closer together then ever before. Their shared grief was an invisible weight pressing upon their shoulders, made bearable only by the sharing.
Three days after Stefan’s departure, a white dove appeared and made a nest in their thatched roof. Strangely, the family felt comforted by the presence of the dove that never left their roof. Patrius always looked for it when he returned from his wood-cutting forays into the forest. Matilda and Filia often looked up when they were doing their outdoor chores to see if the dove was still there and to experience the sense of consolation and protection, which seemed to emanate from the dove.
After a few years, Filia married a cooper and moved to a village about ten miles distant.
Though they missed their daughter greatly, the couple now had the dove for company.
Finally, stricken with years, the old couple became weaker and weaker and sensed that they both were going to die. Patrius said, “Let us go outside, bring our bench and sit on it, hold hands and look at our dove.” Matilda agreed and they brought their bench outside. They settled themselves on the bench and faced their cottage, but were surprised to see that the dove was no longer on the roof. Finally growing too feeble to move, they heard the sound of horses’ hooves.
With their last breaths, they beheld the royal coach approaching. As the coach drew near, they saw a smiling Stefan inside, dressed in shining white garments and looking every inch a Prince. “Come home with me,” said Stefan. Overjoyed and amazed that they suddenly no longer felt feeble, the couple stepped into the coach. As the coach started to pull away, Patrius and Matilda looked back to see if their dove had returned. But the dove, no longer being needed, was gone.
This disappointment was replaced by their boundless joy at seeing how happy Stefan had been and by knowing they would be with Stefan forever in their new home.
by Richard W. Avazian (Elizabeth's grandfather wrote this after her death)Illustrated by Elizabeth's aunt, Marianne Greiner . Elizabeth died as a result of congenital CMV complications.
Once upon a time long, long ago in a far-away land lived Patrius, a woodcutter, and his wife Matilda. They had a 19-year-old daughter, Filia and a ten-year-old son Stefan.
It came to pass that the countryside was ravaged by sickness accompanied by high fever that caused many to perish. Stefan was stricken and shortly became very ill. The woodcutter summoned the old midwife, a gray-haired woman who also served as a doctor. “Patrius, Matilda, I am sorry to tell you that Stefan is beyond my help and must soon die.”
Struck speechless by this pronouncement, they heard the neighing and hoof beats of horses outside their cottage. Patrius went out to discover that the Princess in her royal coach had stopped. “I was returning to my castle when I heard your son was sick. Bring me to him.” Patrius led the Princess inside and she beheld the dying Stefan. “Let me take him home with me and I will heal him. However, I will keep him with me as I have no sons after four years of marriage.” Although it broke their hearts, Patrius and Matilda agreed for they knew it was best for Stefan.
The Princess herself picked Stefan up to carry him to the carriage. As soon as the Princess lifted him, Stefan started to look better. The Princess placed him in the coach seat opposite her and the coach drove off, leaving the couple waving goodbye with tear-stained faces.
Life was not the same in the little cottage, although the family seemed closer together then ever before. Their shared grief was an invisible weight pressing upon their shoulders, made bearable only by the sharing.
Three days after Stefan’s departure, a white dove appeared and made a nest in their thatched roof. Strangely, the family felt comforted by the presence of the dove that never left their roof. Patrius always looked for it when he returned from his wood-cutting forays into the forest. Matilda and Filia often looked up when they were doing their outdoor chores to see if the dove was still there and to experience the sense of consolation and protection, which seemed to emanate from the dove.
After a few years, Filia married a cooper and moved to a village about ten miles distant.
Though they missed their daughter greatly, the couple now had the dove for company.
Finally, stricken with years, the old couple became weaker and weaker and sensed that they both were going to die. Patrius said, “Let us go outside, bring our bench and sit on it, hold hands and look at our dove.” Matilda agreed and they brought their bench outside. They settled themselves on the bench and faced their cottage, but were surprised to see that the dove was no longer on the roof. Finally growing too feeble to move, they heard the sound of horses’ hooves.
With their last breaths, they beheld the royal coach approaching. As the coach drew near, they saw a smiling Stefan inside, dressed in shining white garments and looking every inch a Prince. “Come home with me,” said Stefan. Overjoyed and amazed that they suddenly no longer felt feeble, the couple stepped into the coach. As the coach started to pull away, Patrius and Matilda looked back to see if their dove had returned. But the dove, no longer being needed, was gone.
This disappointment was replaced by their boundless joy at seeing how happy Stefan had been and by knowing they would be with Stefan forever in their new home.
For single page with illustrations, open Woodcutter with sketches edits less photos.doc
Thursday, February 14, 2008
Dr, Gail Demmler Responds to CMV Awareness Question
In a message dated 2/9/2008 11:55:39 A.M. Eastern Standard Time, Dr. Gail Demmler, J.gjdemmle@TexasChildrensHospital.org answered an e-mail query of mine regarding the importance of a listing of us parents, as is done at the Vietnam Memorial in DC. She responded to me:
1. Yes, the Vietnam memorial with names is very moving. I have been there many times. It is an interesting concept for CMV Awareness because each year babies and children and adults who were born with congenital CMV die from complications of their congenital infection. 2. There are many reasons why I feel CMV Awareness initiatives from the lay population, especially parents and families may be key to conquering CMV. They include1. Since there are no proven effective, safe, licensed vaccines to prevent CMV infection in pregnant women, we need to make them aware that prevention in pregnancy may be accomplished (or may be reduced) by knowing about CMV and who is most likely to transmit CMV to them during pregnancy.2. Some physicians and nurses and clinics do counsel patients and pregnant women about CMV but many do not. If the establishment of health care workers do not do the job, then lay people, esp. families who have been touched and are motivated, are a good source of information, as long as it is factual and backed by professionals.3. For decades my CMV website and a few handfuls elsewhere were all the voices we had, but now, with the CDC finally getting behind some of our efforts, we are likely to see an increase in CMV awareness.4. These efforts may then decrease the number of pregnant women experiencing CMV infections and therefore the number of babies born with CMV infection and disease. We do not have studies to prove this yet, but it would be of interest to do these. 5. To make progress towards treatment and prevention, we need more research focused on the practical outcome of lessening or eliminating the public health impact of congenital CMV infection and disease. 6. To do research, resources are needed, including funds for scientists, doctors, staff, buildings, labs, supplies, etc. 7.To get resources, we need the interest and the support of those who have and allocate the resources. The "establishment" of government, industry, and private funding decision makers have not "had the eyes to see, nor the ears to hear" the message about CMV so far -- perhaps because CMV is so silent and stealth, perhaps because "we CMV people" have been suffering in silence too long. Many groups have advocacy initiatives and strategic plans. Establishments are often "reactive" to new ideas and changes, rather than proactive. Our CMV Registry Research Fund has been funded for almost 30 years from not only small government grants, but also from private donations of people and families and their Foundations, who have been personally touched by CMV. I from my personal experience, think it is a potentially powerful source. 8. To effect change in the prevailing attitudes about congenital CMV, we need to be more vocal and "out there." The messages of real people can be very powerful. Hope that helps a bit. I would love to help you, as needed, on your CMV parent book. Dr. D
1. Yes, the Vietnam memorial with names is very moving. I have been there many times. It is an interesting concept for CMV Awareness because each year babies and children and adults who were born with congenital CMV die from complications of their congenital infection. 2. There are many reasons why I feel CMV Awareness initiatives from the lay population, especially parents and families may be key to conquering CMV. They include1. Since there are no proven effective, safe, licensed vaccines to prevent CMV infection in pregnant women, we need to make them aware that prevention in pregnancy may be accomplished (or may be reduced) by knowing about CMV and who is most likely to transmit CMV to them during pregnancy.2. Some physicians and nurses and clinics do counsel patients and pregnant women about CMV but many do not. If the establishment of health care workers do not do the job, then lay people, esp. families who have been touched and are motivated, are a good source of information, as long as it is factual and backed by professionals.3. For decades my CMV website and a few handfuls elsewhere were all the voices we had, but now, with the CDC finally getting behind some of our efforts, we are likely to see an increase in CMV awareness.4. These efforts may then decrease the number of pregnant women experiencing CMV infections and therefore the number of babies born with CMV infection and disease. We do not have studies to prove this yet, but it would be of interest to do these. 5. To make progress towards treatment and prevention, we need more research focused on the practical outcome of lessening or eliminating the public health impact of congenital CMV infection and disease. 6. To do research, resources are needed, including funds for scientists, doctors, staff, buildings, labs, supplies, etc. 7.To get resources, we need the interest and the support of those who have and allocate the resources. The "establishment" of government, industry, and private funding decision makers have not "had the eyes to see, nor the ears to hear" the message about CMV so far -- perhaps because CMV is so silent and stealth, perhaps because "we CMV people" have been suffering in silence too long. Many groups have advocacy initiatives and strategic plans. Establishments are often "reactive" to new ideas and changes, rather than proactive. Our CMV Registry Research Fund has been funded for almost 30 years from not only small government grants, but also from private donations of people and families and their Foundations, who have been personally touched by CMV. I from my personal experience, think it is a potentially powerful source. 8. To effect change in the prevailing attitudes about congenital CMV, we need to be more vocal and "out there." The messages of real people can be very powerful. Hope that helps a bit. I would love to help you, as needed, on your CMV parent book. Dr. D
Wednesday, February 13, 2008
My Story - Living With Congenital CMV
The post below was written by my mom. The Baylor College of Medicine also asked me to write about my experiences living with my disabilities, and this is the article I sent them.
I guess I had a pretty typical childhood. My brother, Peter, is 4 ½ years older than me, and I went through a phase of wanting to do whatever he did. That’s why I played several years of Little League baseball (mostly T-Ball), until it became very clear that sports were not my thing. I was in Brownies for a year, because Peter was in Cub Scouts. That also didn’t last. It kind of took a while for me to realize that trying to fit in with “normal” kids wasn’t going to work. I just had to accept the hand I was dealt, and try to deal with it as best I could.
School was always a challenge for me. Not so much academically, although I struggled in math quite a bit. The worst for me was definitely gym. It was always frustrating to see other kids do things like make a jump-shot, or hit a home run, and think, “Why can’t I do that?” But luckily, I found my strengths in the classroom, and that helped even things out. I was always very good in laugage arts and reading. So whenever I would feel tempted to get discouraged over some of the things I couldn’t do, I would remind myself that I had talents, just in other areas.
In first grade, I was put in a Special Ed. class for most of the day, and I would only join my peers for things like art, music and gym. I don’t think I really should have been kept seperate from the others because it made me feel like an outsider. I never had a chance to get to know my classmates all that much. Plus the fact that my Special Ed. class was doing reading that was far below my abilities. I could easily have kept up with a regular first grade class, in that area at least.
After that year, I was placed in a regular classroom, but was given special help, such as being able to sit close to the board, extra time for tests, etc. Most of my teachers were very willing to accomodate my needs. Things became even better in 4th grade, when I finally met with a teacher of the hearing imparied. She helped make sure all my teachers were aware of what my needs were, as well as helping me to stay organized, which was never an easy task! She basically stayed with me from then through high school. That was a great comfort to me when I moved from one grade to the next, knowing that I was already familiar with at least one of my teachers.
For many teenagers, a driver’s license is a major achievement, offering independence and freedom from parental control. Unlike a lot of my peers, I never really felt any great need to learn to drive. I rode the bus to school and to my part-time job. Plus I had a number of nearby relatives who could offer rides in a pinch. So I never even got serious about getting behind the wheel until after high school. In retrospect, I wish I had acted sooner. From past experience with things like riding a bike, I already knew I would take longer to learn than most people. But because of my late start, I don’t have as much confidence in my abilities as I should, in spite of having my license (after six attempts at the road test!).
I was fortunate to go to a college that had a program for students with special needs, and I did recieve a certain amount of accomdations there. Mostly I was given extra time for tests, or being able to type assignments rather than hand write them. Initially, I planned to become a teacher, and possibly use my experiences to help other students in a similar situation to mine. When that didn’t work out, I changed my major to English, and managed to get a B.A., with a minor in psycology, thanks to all the education courses I took.
Although I am working full time now, I am not sure what I ultimately want to do with my life. But my parents raised me to have a “can-do” attitude, and to focus on my abilities, rather than my disabilities. So whatever I end up doing, I’m sure it won’t be defined by my CMV.
Kristen's Story - 25 Years with CMV
The following is an article that I wrote about my daughter, Kristen born with a congenital CMV infection. I wrote this at the request of Baylor School of Medicine and would like to share it with everyone. If anyone has questions or would just like to "talk" please feel free to e-mail me at mmarino53@yahoo.com. Hope this helps.
Kristen’s Story
By Mary Marino
My daughter, Kristen, was born 10:58am on April 5th, 1982 weighing 6lbs 1oz after a full term, non-eventful second pregnancy. I was 33 at the time. When she was first brought to me I noticed her skin was covered with little red dots. The nurse told me it was from the pressure of the delivery and the fact that her skin was so fair.
She cried all the time. Nothing consoled her. At 8 weeks I found she had an inguinal hernia and she was hospitalized the next day. A week later her pediatrician, on a routine exam, found a grossly enlarged liver and spleen. She was admitted to Albert Einstein Hospital in the Bronx and after a liver biopsy we were given the diagnosis of CMV. At that time (25 years ago) not much was known and we were sent home. My pediatrician did some reading up on CMV but there was not much information available.
She responded to spoken words by smiling but had little physical movement. I kept telling the pediatrician that I thought something was wrong because she was not holding up her head or attempting to roll over. At 8 months of age she was diagnosed with a dislocated hip and was referred to a local rehabilitation hospital where she was evaluated as having the physical ability of a 3 month old. She then started physical and occupational therapy and started to respond quickly. We still did not have a definitive diagnosis.
Over the course of the next 6 years of rehab she had 3 hip surgeries and continual physical and occupational therapy. There is a day I will never forget. At the age of 2 ½ I had her at clinic waiting to see the orthopedic surgeon. She was at the point where she would “cruise” furniture and loved to push things. She wanted her stroller so I stood her down on the floor and she took her first steps! I cried because I had my doubts as to whether she would ever be able to walk. She fell down a lot but she always got up again. At the age of 3 I had her enrolled in a special pre-school (luckily in my neighborhood) that specialized in children with special needs. When it was time for kindergarten I convinced the school district to “try” her in regular kindergarten even though she was small for her age and physically challenged. She adjusted very well even though she had teachers that were not trained for special needs children.
At the age of 6 we were told by the school nurse that Kristen had failed a hearing test. Upon referral to an ear, nose and throat specialist and a CAT scan we learned that she was deaf in her left ear and that the CMV had affected the cerebellum (it had atrophied and the surrounding area was filled with fluid) but none of that could be reversed. She received some physical therapy in school but it was not until she was 9 that she was given the help of a teacher of the hearing impaired. That teacher was wonderful and for the rest of her time in school became her “second mother”. Kristen was able to have a second set of textbooks at home so she did not have to be carry books back and forth and she was allowed extra time to move from classroom to classroom.
She excelled in middle and high school and then it came time to think about college. She did not want to go far from home and we were totally shocked when on senior awards day she was presented with a full scholarship to a local college that was literally “down the hill” from her high school! During her college years she decided it was time to think about learning to drive. That was a real challenge. I had taken her out some but I was not the right person to teach her. She enrolled in a driving school and after 6 attempts passed her driving test. That was a definite highlight in her life. She graduated from college in May 2004 with a BA in English and then had the challenge of finding a job. She persevered (with some pushing from Mom) and was offered a job in December 2004 working for a company that processes newspaper subscriptions.
Today she is a happy, well adjusted 25 year old young lady that has overcome obstacles that have been placed in her path with a smile and a will to do the best that she can do
Sunday, February 10, 2008
Possible Book of CMV Stories
Carmen Burton and I (Lisa Saunders) are excited about collecting stories about how your family was affected by congenital CMV. I wrote to her (she raises awareness in the UK) asking what she thought would be of interest to those reading this potentional book. She wrote back:
"From my experience with families the first thing I'm always asked is "Why didn't I know about it?" Other things that could be useful might be:
At what point did you find out? During the pregnancy or after the birth? If during the pregnancy - did they take any medication?
Do you know where you caught it from?
Do you know if it was a primary infection or a re-occurrence?
Other than recommended for CMV anti-viral medications did any children take any other type of anti-viral medicine? (Reason being - I have a pair of identical twins. Both classed as asymptomatic at birth but did show some signs which were diagnosed due to prematurity and being twins. One was treated with anti viral meds for a different reason and is a lot less affected than the other.) So I am just interested that's all!
A lot of my parents get stressed out by sleep, behaviour, autistic tendencies and eating issues. Some professionals in the UK don't recognise these things as probably being part of the CMV circus, so it would good to get them listed.
I have noticed that quite a few of my children who go to school and are capable of learning; that regardless of their level of attainment, some struggle far more in maths than they do in other subjects.
Might be too many ideas to include as questions, but just things I am interested in!
Will update Natti's story and post it soon.
If you email Neil - either on the circle or from my website - he made and looks after the site for me - I'm sure he can help you with your pictures. If not let me know and I have a dad who is a computer whiz!
Do you want a statement from me why I got involved?
Hoping to get to finally see you in Atlanta!
Carmen
Carmen's newsletter: CMV Support Group Newsletter (from UK)
"From my experience with families the first thing I'm always asked is "Why didn't I know about it?" Other things that could be useful might be:
At what point did you find out? During the pregnancy or after the birth? If during the pregnancy - did they take any medication?
Do you know where you caught it from?
Do you know if it was a primary infection or a re-occurrence?
Other than recommended for CMV anti-viral medications did any children take any other type of anti-viral medicine? (Reason being - I have a pair of identical twins. Both classed as asymptomatic at birth but did show some signs which were diagnosed due to prematurity and being twins. One was treated with anti viral meds for a different reason and is a lot less affected than the other.) So I am just interested that's all!
A lot of my parents get stressed out by sleep, behaviour, autistic tendencies and eating issues. Some professionals in the UK don't recognise these things as probably being part of the CMV circus, so it would good to get them listed.
I have noticed that quite a few of my children who go to school and are capable of learning; that regardless of their level of attainment, some struggle far more in maths than they do in other subjects.
Might be too many ideas to include as questions, but just things I am interested in!
Will update Natti's story and post it soon.
If you email Neil - either on the circle or from my website - he made and looks after the site for me - I'm sure he can help you with your pictures. If not let me know and I have a dad who is a computer whiz!
Do you want a statement from me why I got involved?
Hoping to get to finally see you in Atlanta!
Carmen
Carmen's newsletter: CMV Support Group Newsletter (from UK)
Friday, February 8, 2008
Elizabeth Saunders: Forever Sweet Sixteen
by Elizabeth's mother, Lisa Saunders
The moment Elizabeth was born, I felt a stab of fear. I knew there was something very wrong. My immediate thought was "Her head looks so small — so deformed."The neonatologist entered my hospital room and declared, "Your daughter has profound microcephaly — her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself."He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV).
How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it, as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Why hadn’t my ob/gyn warned me? While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home and cared for infants in Sunday school. I felt sick at what my ignorance had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.”My life is over,” I thought. “How could God let this happen to us?” I prayed God would heal Elizabeth. When He didn’t do it immediately, I begged him to kill me--through an earthquake (pretty rare in the D.C. area), through a lightning strike, or perhaps a drive-by shooting. I just couldn’t handle raising a child like that. Period.
Since God wouldn’t kill me, and didn’t seem to be healing Elizabeth, I fervently prayed I was love her. It was just so painful to see how abnormal she was—the fear over her future overwhelmed me. I cringed hearing those well-meaning words, “God must really love you to give you a child like that,” or “You must be special for Him to trust his child with you.” I have heard of mothers killing their handicapped children or being checked into a mental clinic. Many fathers leave the family because they can’t even bear to look at their child.
What eventually helped me recover from deep depression was my husband Jim’s love and acceptance of Elizabeth, friends who went out of their way to help me with her care, and reading Psalms about God’s people who cried out to Him in their suffering. I didn’t feel so alone in my grief anymore. My love for Elizabeth gradually grew and I thoroughly delighted in her love for us. She was perfectly content to stare into my eyes and smile for hours. Other than the times her disabilities caused her to suffer, I was happy and no longer dwelled on the fact that she was stuck at a three-month developmental level.
Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us, surviving several bouts with pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was still a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. She was even a contributing member of society—shortly after her birthday she donated 10” of her long beautiful hair to an organization that makes wigs for sick children. She happily let me cut her hair off, thinking it funny how hard I worked to cut evenly while holding her head up.
Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping my short-haired girl her into her wheelchair, I held her face in my hands, kissed her cheek, and said, "Now be a good girl today."
She smiled as she heard her teacher say what she said every time, "Elizabeth is always a good girl!" With that, I left.
At the end of the day, I got the call I had always feared."Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."
We met her ambulance at the hospital. Although the medical staff continued to work on her, she was already gone. After they unhooked her from the life support, my husband and I took turns holding her. While holding Elizabeth on his lap, Jim looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth.
How could we leave her at the hospital and just walk out? She didn’t really look dead, merely asleep. After about three hours, however, Elizabeth’s eyes began to sink—a sign that her soul had truly left her body. We tried to imagine that she was enjoying Heaven in a new body—a much better one. And now Jim and I were left without her—we were alone.
We placed her back on the gurney and pulled the blanket up to her to chin, as if we were putting her to bed for the night. With a final kiss goodbye and one more glance back as we paused at the exit of her room, we left.
Elizabeth’s grave marker is a sandy-red, heart-shaped stone. To remind us where Elizabeth is and what she is doing, we had the following verses etched on the back: “I will dwell in the house of the Lord forever” (Psalm 23:6) “Then the lame man will leap like a deer, and the tongue of the mute will sing” (Isaiah 35:6).
It has two years since we lost Elizabeth. At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be cold or sick. She has received what was promised to her ancestors who have gone before her: “I will gather you to your fathers and you shall be gathered to your grave in peace.” (2 Chron 34:28).
For the remainder of my days Elizabeth will be forever "Sweet Sixteen." Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. I have returned to the CMV research and literature and have learned there is still no vaccine, but there are new treatments emerging. What upsets me the most, however, is that women of childbearing age are still not being warned about the infection, how to avoid it and how treat it.
According to Drs. Cannon and Davis in their article, "Washing Our Hands Of The Congenital Cytomegalovirus Disease Epidemic,” http://www.biomedcentral.com/1471-2458/5/70, “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.” Yet congenital CMV results in more disabilities than Down syndrome. Dr. Schmid of the CDC wrote to me: "The overwhelming majority of cases are not evident at the time of birth...the development of symptoms, such as neurosensory hearing loss and mental retardation, may not manifest for a year or longer."
One mother wrote to me: “It seems kind of silly that they tell you not to change the cat litter [to avoid toxoplasmis] but forget to tell you not to change the baby.” Another mother wrote that had she been warned about congenital CMV, “I would have been insane about washing my hands, carrying around hand sanitizer 100 % of the time.”
According to the CDC, there are steps women can take to reduce the risk of CMV infection during pregnancy:
Do not kiss young children under the age of 5 or 6 on the mouth or cheek. Instead, kiss them on the head or give them a big hug.
Do not share food, drinks or utensils with young children.
Wash hands often with soap and water, especially after changing diapers.
If working in a daycare center, try to avoid caring for children under the age of 2 1/2.
For more information, visit www.cdc.gov/cmv. One way you can help reduce the spread of CMV is by printing the brochure found on the CDC Web site and asking your doctors to post it in their waiting rooms. See
Brochure on CMV ( PDF)- In English- en Español (In Spanish)
To meet other children born with congenital CMV, see cmv-poster 1.61mb.jpg format
Lisa Saunders, of Suffern, NY, is a freelance writer http://www.authorlisasaunders.com/. She can be reached at saundersbooks@aol.com
The moment Elizabeth was born, I felt a stab of fear. I knew there was something very wrong. My immediate thought was "Her head looks so small — so deformed."The neonatologist entered my hospital room and declared, "Your daughter has profound microcephaly — her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself."He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV).
How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it, as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Why hadn’t my ob/gyn warned me? While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home and cared for infants in Sunday school. I felt sick at what my ignorance had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.”My life is over,” I thought. “How could God let this happen to us?” I prayed God would heal Elizabeth. When He didn’t do it immediately, I begged him to kill me--through an earthquake (pretty rare in the D.C. area), through a lightning strike, or perhaps a drive-by shooting. I just couldn’t handle raising a child like that. Period.
Since God wouldn’t kill me, and didn’t seem to be healing Elizabeth, I fervently prayed I was love her. It was just so painful to see how abnormal she was—the fear over her future overwhelmed me. I cringed hearing those well-meaning words, “God must really love you to give you a child like that,” or “You must be special for Him to trust his child with you.” I have heard of mothers killing their handicapped children or being checked into a mental clinic. Many fathers leave the family because they can’t even bear to look at their child.
What eventually helped me recover from deep depression was my husband Jim’s love and acceptance of Elizabeth, friends who went out of their way to help me with her care, and reading Psalms about God’s people who cried out to Him in their suffering. I didn’t feel so alone in my grief anymore. My love for Elizabeth gradually grew and I thoroughly delighted in her love for us. She was perfectly content to stare into my eyes and smile for hours. Other than the times her disabilities caused her to suffer, I was happy and no longer dwelled on the fact that she was stuck at a three-month developmental level.
Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us, surviving several bouts with pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was still a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. She was even a contributing member of society—shortly after her birthday she donated 10” of her long beautiful hair to an organization that makes wigs for sick children. She happily let me cut her hair off, thinking it funny how hard I worked to cut evenly while holding her head up.
Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping my short-haired girl her into her wheelchair, I held her face in my hands, kissed her cheek, and said, "Now be a good girl today."
She smiled as she heard her teacher say what she said every time, "Elizabeth is always a good girl!" With that, I left.
At the end of the day, I got the call I had always feared."Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."
We met her ambulance at the hospital. Although the medical staff continued to work on her, she was already gone. After they unhooked her from the life support, my husband and I took turns holding her. While holding Elizabeth on his lap, Jim looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth.
How could we leave her at the hospital and just walk out? She didn’t really look dead, merely asleep. After about three hours, however, Elizabeth’s eyes began to sink—a sign that her soul had truly left her body. We tried to imagine that she was enjoying Heaven in a new body—a much better one. And now Jim and I were left without her—we were alone.
We placed her back on the gurney and pulled the blanket up to her to chin, as if we were putting her to bed for the night. With a final kiss goodbye and one more glance back as we paused at the exit of her room, we left.
Elizabeth’s grave marker is a sandy-red, heart-shaped stone. To remind us where Elizabeth is and what she is doing, we had the following verses etched on the back: “I will dwell in the house of the Lord forever” (Psalm 23:6) “Then the lame man will leap like a deer, and the tongue of the mute will sing” (Isaiah 35:6).
It has two years since we lost Elizabeth. At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be cold or sick. She has received what was promised to her ancestors who have gone before her: “I will gather you to your fathers and you shall be gathered to your grave in peace.” (2 Chron 34:28).
For the remainder of my days Elizabeth will be forever "Sweet Sixteen." Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. I have returned to the CMV research and literature and have learned there is still no vaccine, but there are new treatments emerging. What upsets me the most, however, is that women of childbearing age are still not being warned about the infection, how to avoid it and how treat it.
According to Drs. Cannon and Davis in their article, "Washing Our Hands Of The Congenital Cytomegalovirus Disease Epidemic,” http://www.biomedcentral.com/1471-2458/5/70, “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.” Yet congenital CMV results in more disabilities than Down syndrome. Dr. Schmid of the CDC wrote to me: "The overwhelming majority of cases are not evident at the time of birth...the development of symptoms, such as neurosensory hearing loss and mental retardation, may not manifest for a year or longer."
One mother wrote to me: “It seems kind of silly that they tell you not to change the cat litter [to avoid toxoplasmis] but forget to tell you not to change the baby.” Another mother wrote that had she been warned about congenital CMV, “I would have been insane about washing my hands, carrying around hand sanitizer 100 % of the time.”
According to the CDC, there are steps women can take to reduce the risk of CMV infection during pregnancy:
Do not kiss young children under the age of 5 or 6 on the mouth or cheek. Instead, kiss them on the head or give them a big hug.
Do not share food, drinks or utensils with young children.
Wash hands often with soap and water, especially after changing diapers.
If working in a daycare center, try to avoid caring for children under the age of 2 1/2.
For more information, visit www.cdc.gov/cmv. One way you can help reduce the spread of CMV is by printing the brochure found on the CDC Web site and asking your doctors to post it in their waiting rooms. See
Brochure on CMV ( PDF)- In English- en Español (In Spanish)
To meet other children born with congenital CMV, see cmv-poster 1.61mb.jpg format
Lisa Saunders, of Suffern, NY, is a freelance writer http://www.authorlisasaunders.com/. She can be reached at saundersbooks@aol.com
Lisa Saunders’ daughter Elizabeth was born with congenital CMV in 1989. “The moment Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, ‘If she lives, she will never roll over, sit up, or feed herself.’ He was right. We spent the next 16 years making life-and-death decisions about drugs, surgeries, etc., sometimes without support from the medical community. I was shocked to discover that many doctors think congenital CMV infection is really rare! For example, my OB/GYN had never warned me about the risk of doing daycare for preschoolers in my home. Our best allies were the pediatricians, who helped us wade through the suggestions of specialists to find ways to keep our daughter comfortable. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Jim cried, ‘No one is ever going to look at me again the way Elizabeth did.’ I don’t want that to be the cry of any other parent because no one warned them about CMV.” Lisa Saunders (saundersbooks@aol.com) is a writer for the State University of New York at Rockland and the author of short stories and books. Photo of Elizabeth with her family:http://web.ecomplanet.com/SAUN6703/ServerContent/MyCustomImages/SAUN6703CustomImage0368759.jpg
Friday, February 1, 2008
CMV Support Group (UK) Newsletters
Hello everyone, wishing you all a great Christmas, and a Happy New Year. Here is the latest news from Carmen.
http://www.cmvsupport.org/uploads/Dec-07-CMV-News.doc (MS-WORD)
More recent and older newsletters can be seen on the UK parent CMV Support group atwww.cmvsupport.org
About Carmen Burton
Carmen Burton – Chairperson UK Congenital CMV Association
After leaving college I did some voluntary work at the local Deaf School and worked in the clerical departments at two local hospitals. I also studied British Sign Language at night school.
I was then offered a job as an Educational Care Officer (ECO) in a Special School supporting children with a wide range of severe learning and physical disorders. I continued in this line of work for about the next eight years until our daughter Natalie was born in 1993 with symptomatic CMV. She was very ill and had many of the side effects of cCMV including Profound Deafness, developmental delay and behaviour issues.
When Natalie was about two I went back to work again - as a part time ECO supporting Deaf children in a local mainstream Primary School Unit. The stress of working with Deaf children (some with additional needs) and also looking after Natalie with all her difficulties became too much. I now work for my father as a part time engineer – fabricating metal gates, railings etc. This is ideal because I can work round all of Natalie’s appointments and when I’m feeling stressed I can legitimately throw pieces of metal around or bang a few hammers!
Natalie had a Cochlear Implant in 1996 and I co-founded the Midlands Region of CICS (Cochlear Implanted Children’s Support) Group in 1999, of which I am still Coordinator and a Trustee of the main group. I am also on the Committee of our local DCS. (Deaf Children’s Society)
I took over the CMV Association in 2005. Since then membership is growing steadily. We now have a website and two Awareness Posters and we aim to become a registered charity. Our aim is to provide help, advice and support for families affected by cCMV, to put them in contact with others, to promote Awareness and to aid research.
Carmen Burton 31.01.08
http://www.cmvsupport.org/uploads/Dec-07-CMV-News.doc (MS-WORD)
More recent and older newsletters can be seen on the UK parent CMV Support group atwww.cmvsupport.org
About Carmen Burton
Carmen Burton – Chairperson UK Congenital CMV Association
After leaving college I did some voluntary work at the local Deaf School and worked in the clerical departments at two local hospitals. I also studied British Sign Language at night school.
I was then offered a job as an Educational Care Officer (ECO) in a Special School supporting children with a wide range of severe learning and physical disorders. I continued in this line of work for about the next eight years until our daughter Natalie was born in 1993 with symptomatic CMV. She was very ill and had many of the side effects of cCMV including Profound Deafness, developmental delay and behaviour issues.
When Natalie was about two I went back to work again - as a part time ECO supporting Deaf children in a local mainstream Primary School Unit. The stress of working with Deaf children (some with additional needs) and also looking after Natalie with all her difficulties became too much. I now work for my father as a part time engineer – fabricating metal gates, railings etc. This is ideal because I can work round all of Natalie’s appointments and when I’m feeling stressed I can legitimately throw pieces of metal around or bang a few hammers!
Natalie had a Cochlear Implant in 1996 and I co-founded the Midlands Region of CICS (Cochlear Implanted Children’s Support) Group in 1999, of which I am still Coordinator and a Trustee of the main group. I am also on the Committee of our local DCS. (Deaf Children’s Society)
I took over the CMV Association in 2005. Since then membership is growing steadily. We now have a website and two Awareness Posters and we aim to become a registered charity. Our aim is to provide help, advice and support for families affected by cCMV, to put them in contact with others, to promote Awareness and to aid research.
Carmen Burton 31.01.08