What Women Aren't Expecting When They are Expecting

I received the following press release from Janelle Greenlee, President/Founder, Stop CMV - The CMV Action Network:

What Women Aren't Expecting When They are Expecting Only 13% of Women Have Heard of CMV - The Most Common Viral Cause of Birth Defects, Disabilities June 1, 2012 - Hot on the heels of the recent box office draw, What to Expect when You're Expecting, pregnant women are being warned by the Centers for Disease Control and Prevention (CDC) about what they may not expect -- CMV (cytomegalovirus), a common virus that can cause birth defects and developmental disabilities. A 2010 CDC survey reported that only 13 percent of women had heard of CMV, and very few were aware of prevention measures against the virus. In the popular pregnancy book by the same name, What to Expect when You're Expecting, women are told that the chances of becoming infected with CMV during pregnancy are "remote." Not so, says the CDC. The CDC reports that one in every 150 children is born with congenital CMV. CMV is the most common congenital (meaning present at birth) infection in the United States and is the most common viral cause of birth defects and disabilities, including deafness, blindness, cerebral palsy, mental and physical disabilities, seizures, and death.     CMV is present in saliva, urine, tears, blood and mucus, and it is carried by 70 percent of healthy infants, toddlers, preschoolers, and children who contract the virus from their peers. Pregnant women who come into contact with these fluids can contract CMV, posing a major risk to daycare workers, preschool teachers, therapists, nurses and, more importantly, mothers who may not practice the best hygiene around their own small children.     "These messages need to be communicated to pregnant women to inform and empower them to take a more active role in their personal hygiene and healthcare decisions," says Janelle Greenlee, president and founder of Stop CMV and mother to twin daughters, both born with congenital CMV.     But pregnant women aren't being educated by medical professionals about how to prevent CMV. Both the American College of Obstetricians and Gynecologists (ACOG) and the CDC recommend that OB/GYNs counsel women on basic prevention measures to guard against CMV infection. These include frequent hand washing, not kissing young children on the mouth, and not sharing food, towels or utensils with small children. The United States Senate has even weighed in, passing legislation that recommends more CMV prevention counseling for women of childbearing age.     Women's awareness of CMV ranks last among other birth defects and common childhood illnesses despite CMV being one of the most common and most serious causes of birth defects and disabilities. "A lot of people are really shocked when they hear that there are as many kids with disabilities from congenital CMV as there are kids with fetal alcohol syndrome or Down syndrome or spina bifida -- and people haven't heard of it," said CDC epidemiologist Michael Cannon. June is National Congenital CMV Awareness Month Stop CMV, a nonprofit organization dedicated to raising awareness of congenital CMV, wants to increase CMV's public profile to save thousands of children from disability and death.Stop CMV can connect media with parent supporters in the United States who will provide local media interviews. Please contact media@stopcmv.org. ###

Stop CMV - The CMV Action Network www.StopCMV.org media@stopcmv.org

Babies Given Fighting Chance

If you are pregnant and want to know if you have a primary cytomegalovirus (CMV) infection, you can ask your OB/GYN for a blood test. In the past, however, there was little one could do with the results—even if they were positive. But now, there is currently a study underway to see if receiving CMV hyperimmune globulin (HIG) will prevent congenital CMV infection—a disease that causes more disabilities in unborn children than Down syndrome. If you are included in this current study, there is a 50% chance you will receive a placebo, because although HIG is promising, it is still unproven.

When I was pregnant with my daughter Elizabeth in 1989, I didn’t know the precautions to take to avoid contracting CMV—namely through careful hand washing when working with young children and their saliva and urine. That means a woman of childbearing age shouldn’t even kiss their own toddlers around the mouth. Young children are the majority of the carriers, and I not only ran a daycare center in my home when I was pregnant with Elizabeth, I had a toddler of my own. My darling Elizabeth was born severely disabled as a result of me passing the virus, which I did not know I had caught because it is often “silent,” onto her. She died when she was 16 during a seizure.

As a result of my work to raise a congenital CMV prevention message, which I hope will become as common as the “don’t change the kitty litter” rule when you are pregnant, I received the following e-mail from Brenna Anderson, M.D., M.Sc. She is Study Chair for a 14-center NICHD Maternal Fetal Medicine Units Network (MFMU) randomized clinical trial testing the efficacy and effectiveness of hyperimmune globulin for prevention of congenital CMV in women with primary infection:. She wrote to me:

“Cytomegalovirus (CMV) is the most common congenital infection, with a prevalence of approximately 1% in the United States, translating into 44,000 congenitally infected infants per year. A substantial proportion of these 44,000 infants will die or suffer permanent injury as a result of their infection. The severity of congenital infection is greatest with primary maternal CMV infection.

“Currently, there is no proven method of preventing congenital CMV infection, and the approach to primary maternal CMV infection in the United States is haphazard and ineffective. One small, non-randomized study suggests that maternal administration of CMV hyperimmune globulin may reduce the rate of congenital CMV infection following maternal primary infection.

“We are hoping that you will be willing to refer women that contact you who may have primary infection to our trial. I can receive the referrals for potentially infected women. I am happy to interact directly with the women if that is what they would prefer. Or I could simply provide contact information for the closest center in our trial.”

To learn more about the current study, visit: http://clinicaltrials.gov/ct2/show/NCT01376778?term=congenital+cmv&rank=4

or contact:

Brenna Anderson, M.D., M.Sc.

Women & Infants Hospital of RI

101 Dudley Street

Providence, RI 02905

banderson@wihri.org

401-274-1122 ext. 7456

Pregnant with CMV?

If you learned you have a primary cytomegalovirus (CMV) infection and are pregnant, there is currently a study underway to see if receiving CMV hyperimmune globulin (HIG) will prevent congenital CMV infection.

If you are included in this current study, there is a 50% chance you will receive a placebo, because although HIG is promising, it is still unproven.

I received the following e-mail from the Study Chair for a 14-center NICHD Maternal Fetal Medicine Units Network (MFMU) randomized clinical trial testing the efficacy and effectiveness of hyperimmune globulin for prevention of congenital CMV in women with primary infection:

Cytomegalovirus (CMV) is the most common congenital infection, with a prevalence of approximately 1% in the United States, translating into 44,000 congenitally infected infants per year. A substantial proportion of these 44,000 infants will die or suffer permanent injury as a result of their infection. The severity of congenital infection is greatest with primary maternal CMV infection.

Currently, there is no proven method of preventing congenital CMV infection, and the approach to primary maternal CMV infection in the United States is haphazard and ineffective. One small, non-randomized study suggests that maternal administration of CMV hyperimmune globulin may reduce the rate of congenital CMV infection following maternal primary infection.

To learn more about the current study, visit: http://clinicaltrials.gov/ct2/show/NCT01376778?term=congenital+cmv&rank=4

or contact:

Brenna Anderson, M.D., M.Sc.

Women & Infants Hospital of RI

101 Dudley Street

Providence, RI 02905

banderson@wihri.org

401-274-1122 ext. 7456

Another Mom Didn't Know Daycare Danger

Lisa Saunders with her daughter, Elizabeth (1989-2006)

 

I just went to the hospital to visit yet another new mom who didn't know that she was putting her pregnancy at risk by working at a daycare center. I too wasn't warned by my OB/GYN about the precautions I should have taken if working with young children. My daughter, Elizabeth, was born severely disabled by the virus in 1989. She died at the age of 16, leaving me heartbroken.

 

I have been trying to reach doctors with the message they should warn their patients about congenial CMV (cytomegalovirus), but perhaps I should spend more time trying to get day care centers to warn their workers, as is done on cigarette and alcohol labels. Or perhaps I should fight for signs in restrooms stating that certain infections can harm unborn children--therefore the necessity of hand washing after changing diapers, wiping noses, etc. I welcome any ideas from the community. Everyone knows not to change the kitty litter when they are pregnant. How can we let the country know that the saliva and urine of children needs to be handled cautiously?

 

I have written the following press release to let organizations know of my availability as a free local speaker on how to prevent the #1 viral cause of birth defects:

 

Author Lectures on #1 Birth Defects Virus—More Common Than Down Syndrome

 

"What you don't know can hurt your unborn baby"

 

Author and mother of child born disabled by congenital CMV, Lisa Saunders of Mystic, CT,  is available to speak on how to prevent the #1 viral cause of birth defects, which causes more disabilities than Down syndrome.

 

Few women have heard of congenital CMV (cytomegalovirus) and more than half of OB/GYNs surveyed admitted they don't warn their patients about it.

 

According to the CDC:

• Every hour, congenital CMV causes one child to become disabled
•  Each year, about 30,000 children are born with congenital CMV infection
• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV

Author Lisa Saunders didn’t know about CMV prevention until her daughter, Elizabeth, was born severely disabled by the virus in 1989. Elizabeth had cerebral palsy, epilepsy, and was mentally, visually and hearing impaired. While pregnant, Saunders ran a licensed daycare in her home while raising a toddler.

 

Saunders spoke at the Centers for Disease Control and Prevention (CDC) in Atlanta, G.A., at the international 2008 Congenital CMV Conference. She said, “Mothers at the conference were coming up to me after my speech, with their children in wheelchairs or wearing hearing aids, and asked, ‘Why didn’t my OB/GYN warn me how to protect my baby from CMV? Why haven't you done more to shout it from the rooftops?’”

 

The CDC makes the following recommendations on simple steps you can take to avoid exposure to saliva and urine that might contain CMV:

Wash your hands often with soap and water for 15-20 seconds, especially after

• changing diapers  
• feeding a young child
• wiping a young child’s nose or drool
• handling children’s toys

Do not share food, drinks, or eating utensils used by young children

 

Do not put a child’s pacifier in your mouth

 

Do not share a toothbrush with a young child

 

Avoid contact with saliva when kissing a child

 

Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva

 

Saunders said, "Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” I hope to reach a general audience by sharing the unusual account of how a big, old homeless dog found his way to Elizabeth's couch. I also include CMV prevention and treatment tips from the country’s leading CMV experts. The first chapter is available for free viewing in Amazon’s e-book version at: www.amazon.com/dp/B005GRAE0I

 

The next international congenital CMV conference, where doctors, researchers and families will gather, will be held in San Francisco, California, Mon., Oct.29 - Fri., Nov. 2, 2012. A major objective of the meeting is to allow relatives caring for CMV patients to learn as much as possible from the most dedicated specialists in the world. The conference organizers have devised a special registration fee for up to four family members to attend. More Info: www.mcaevents.org/t/01/cmv2012/index.aspx

 

To learn about the congenital CMV community of families, visit my blog at: http://congenitalcmv.blogspot.com/

To learn more about the book and The National Congenital CMV Disease Registry and Research Program, visit: http://www.unlimitedpublishing.com/cmv/

###

See Lisa Saunders in a short news interview at: http://www.wusa9.com/video/default.aspx?bctid=34235723001 or visit her website to see photos of her daughter, Elizabeth, at http://www.authorlisasaunders.com/

 

Link to country's leading congenital CMV experts: http://www.congenitalcmv.org/foundation.htm

 

An article quoting Saunders and CMV experts: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

 

 

Those Who Can't Be Home for Christmas

 

Elizabeth and I when she was about three

While sipping coffee and paying bills at Starbucks in Mystic, CT, tears sprang when I heard the song that gets me every year--"I'll Be Home For Christmas."


As usual, I cried for the people I miss, but six years ago, I remember crying in thankfulness that our younger daughter, Elizabeth, managed to be home for yet another Christmas.


Expecting Elizabeth, due to arrive Christmas Eve of 1989, had been an exciting experience. But the moment she was born on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small--so deformed.


The neonatologist said, "Your daughter's 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). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Why hadn’t my OB/GYN warned me about this?


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. I felt sick at what my lack of knowledge 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.


When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”--just like Charlie Brown with that pathetic Christmas tree.


Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers, and could not speak or hold up her head, Elizabeth was very happy and loved going for long car rides--especially to look at Christmas lights. She also enjoyed school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."


Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping 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." The medical team did all they could, but she was gone.


While holding Elizabeth on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”


Now, as I prepare to celebrate my sixth Christmas without her, it is with some heartache that I bring down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, old rescue dog Riley, and watch us decorate. Now, I perform one new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”


Now, I only visit with Elizabeth in my dreams, but to feel her presence on a more continuous basis, I share her life with others. After speaking about her at the first international Congenital CMV conference held at the Centers for Disease Control in Prevention (CDC) in Atlanta, GA, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"


Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” I hope to reach a general audience by sharing the unusual account of how a big, old homeless dog found his way to Elizabeth's couch while including CMV prevention and treatment tips from the country’s leading CMV experts. The first chapter is available for viewing in Amazon’s e-book version at: www.amazon.com/dp/B005GRAE0I
 
When I asked the CDC what else I could do to help raise a CMV prevention message, I was told about a woman who might be able to advise me--Marti Perhach. Marti, a Pomona, CA, mother, lost her own daughter Rose in 1998, and along with other grieving parents, is successfully waging a campaign to raise awareness and prevent Group B Strep (GBS) disease in babies before birth through early infancy. When I told Marti that I thought it took guts to post a photo of her dead daughter on her website, she said, "But that is the only picture I have of Rose."


According to Marti, "Rose had a healthy fetal heartbeat moments before the OB stripped my membranes even though I had cultured positive for GBS. Rose was stillborn the next morning as GBS had infected her lungs and amniotic fluid. Some experts believe that invasive procedures push GBS closer to the baby where it is known to cross even intact membranes."


Marti believes that if the public works together, we can inspire a change in awareness and OB/GYN protocol that will save children from congenital CMV, the #1 viral cause of birth defects, as well as several other infections the CDC wishes to prevent.*


To help children come home for Christmas, hand out the CDC's fact sheet on preventing infections during pregnancy available at: http://www.cdc.gov/ncbddd/pregnancy_gateway/infections.html

###

*End Note:


Anything But a Dog! raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry link at: http://www.unlimitedpublishing.com/cmv/


Now, due largely due to the collective efforts of Marti and many other parents through the Jesse Cause Foundation and the Group B Strep Association, OB/GYN's routinely test their patients for this bacteria prior to giving birth. Because much works still needs to be done to prevent GBS disease in babies before birth through early infancy, Marti co-founded Group B Strep International: http://www.groupbstrepinternational.org/

Janelle Greenlee of Sunnyvale, California, is another mother working hard to prevent infection –related disabilities in future children. The mother of twin sisters, Riley and Rachel, who were born disabled because Janelle caught cytomegalovirus (CMV), said, "We hope that women, families and friends will become familiar with the CMV virus and will take vigilant steps to prevent infection. We believe that it is better for women and their families to learn about CMV well prior to pregnancy so that they will never have to learn of it when it is too late." Janelle founded Stop CMV - The CMV Action Network: www.stopcmv.org

True Story of Lazy, Homeless Dog and Lonely, Little Girl Now an E-Book

Book includes how to prevent #1 birth defects virus

Mystic, CT---The publisher of "Anything But a Dog!" is now making the true story of a lazy, homeless dog and a lonely, little girl available as an e-book on Amazon.com. See Chapter One by clicking on the book’s image at: http://www.amazon.com/dp/B005GRAE0I

"Anything But a Dog! The perfect pet for a girl with congenital CMV," is a mother’s humorous and moving search for one pet to suit two very different daughters--one a tomboy, the other mentally and physically disabled from the # 1 birth defects virus, congenital CMV (cytomegalovirus).

Author and mother, Lisa Saunders, says “no” to her daughter Jackie’s pleas for a dog, fearing it will be too rambunctious around Jackie’s disabled little sister Elizabeth. But she does make her a promise she thinks will never come to pass: “If God brings a dog to our door, then you can have it.” In the meantime, the family wrestles with a series of dysfunctional pets: a flesh-eating hamster, an attack cat, killer ants and a very smelly rabbit. Then one day, the unexpected happens: a shivering, dirty puppy shows up at their door. But is this dog really Heaven-sent?

Published by Unlimited Publishing LLC in 2009, "Anything But a Dog!" includes the latest news on how to prevent the far-reaching but under-reported effects of congenital CMV, the #1 viral cause of birth defects--more common a cause of disabilities than Down syndrome. Women who care for young children are at greatest risk and need to practice caution around toddler saliva (by avoiding kissing them around the mouth and through careful hand-washing).

Saunders’ interview on USA 9 News: http://www.wusa9.com/video/default.aspx?bctid=34235723001

Reviews:

"If you're an animal lover, you'll love the critter tales as much as the special-needs storyline." Terri Mauro, About.com

“Saunders takes readers on a road trip as harrowing as any Dog Whisperer training challenge." Tonia Shakespeare, Rockland Magazine

“A hilarious set of pet tales! Lisa has given us yet another funny, tender tale of family life.” Dr. Elisabeth Schafer, author of Vegetable Desserts: Beyond Carrot Cake and Pumpkin Pie

About Lisa Saunders

Lisa Saunders currently lives in Mystic, CT, with her husband and beagle/basset hound. She the Congenital CMV Foundation parent representative, and in addition to Anything But a Dog!, is the author of Ever True: A Union Private and His Wife and Ride a Horse, Not an Elevator. See her work at: http://www.authorlisasaunders.com/

###
Learn more about Congenital CMV:

Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/cmv/index.html

Saunders’ blog: http://congenitalcmv.blogspot.com/

Lisa Saunders Discussing Anything But a Dog!:
http://www.youtube.com/user/LisaSaundersCom?feature=mhee#p/u/14/ludkrnq9vTQ

Other reviews of Anything But a Dog!

"I just loved it! An entertaining yet honest look at what it's like to raise a child with disabilities."- Janelle Greenlee,.stopcmv.org, mother of twin daughters Riley and Rachel, born with Congenial CMV

"Saunders weaves laughter and tears, congenital CMV education and the challenges of raising two daughters – one a tomboy and the other severely disabled." Deborah J. Botti, Times Herald Record

"I congratulate Lisa on producing a very good piece of work," says Gail J Demmler-Harrison, MD, Director of the Congenital CMV Disease Registry and Research Program, Baylor College of Medicine.

“A mother of a daughter born with severe disabilities uses humor to candidly relate experiences of acceptance and daily hardships with the people and pets forever changed by her child’s life. The book also contains resources, contacts and support for anyone whose life is touched by CMV (congenital cytomegalovirus.)” Joni and Friends

Having walked the same road, I've lived Lisa's feelings and stories and ultimately shared the same unshakeable and deep, deep love a mother has for her CMV child." Tracy McGinnis, Founder of the Brendan B. McGinnis Congenital CMV Foundation and mother of Brendan born with congenital CMV

“A remarkable story, told in a way that is powerful and unforgettable. The dialogue is delightful! It's almost impossible to end a book in a truly satisfying way, but Lisa has succeeded 100%. I have a pregnant friend who works at a preschool and daycare facility who definitely needs to know about congenital CMV. I plan to print out some information for her immediately.” Krista Niles, Graduate Student, University of Chicago

"I read this straight through in one sitting and loved it! It was moving—and funny! The appendages about congenital CMV contain such valuable information, and the addendums are very moving. This book is an incredible contribution." Mary Goodin, M.A., Educator

Why did my daughter die?

by Lisa Saunders

Why did my daughter die? Because I didn't know about congenital CMV (cytomegalovirus) prevention.

Today is Congenital CMV Awareness Day and June is Congenital CMV Awareness Month. Perhaps this new attempt at a prevention message will help other children enjoy a healthier childhood.

Expecting our second child, due to arrive Christmas Eve of 1989, had been an exciting experience. What a Christmas present! But the moment Elizabeth was born on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small–so deformed.

The neonatologist 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) — a virus that may have no symptoms for the mother.

The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome. Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Hands must be washed after wiping runny noses, diaper changes, etc. Why hadn’t my OB/GYN warned me about this?

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. 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. I asked God to heal her instantly, but He didn’t. So, I begged him to kill me and prayed to be crushed to death in an earthquake. I just couldn’t handle raising such an afflicted child, period.

Thankfully my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she has been born into.” He was just like Charlie Brown with that pathetic Christmas tree.

It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish. Life did become good again--but it took a lot of help from Jim, family, friends, the Book of Psalms, and a couple of Valium! When Elizabeth finally figured out how to look into my eyes, she smiled—and I was hooked.

On Elizaeth's 16th birthday, I awoke feeling so proud of her. How hard she fought to remain with us in the land of the living–overcoming several battles with pneumonia, major surgeries and most recently, seizures. Weighing only 50 pounds, she looked funny 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 a very happy young lady with a love of adventure-- long car rides being one of her favorites. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children.

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping 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.”

The medical team did all they could, but she was gone. While holding Elizabeth on his lap, my husband 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 Elizabeth did.

Thank you for reading about Elizabeth.

Sincerely,

Lisa Saunders, Mystic, CT

P.S. In an effort to record the fun I had raising Elizabeth beside her tomboy sister, Jackie, I wrote the book, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It is the unusual story of how a homeless, old dog found his way to Elizabeth's couch. The book concludes with tips for preventing congenital CMV from the country’s leading CMV experts and gives information on emerging treatments for women who find they have contracted CMV while pregnant. Available through the National Congenital Disease Registry, “Anything But a Dog!” raises funds for congenital CMV parent support and research if purchased through: http://www.unlimitedpublishing.com/cmv/

To see photos of Elizabeth growing up, please visit my website at: http://www.authorlisasaunders.com/