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.
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.
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.