Tuesday, April 23, 2013

When Will Pregnant Women Hear the Truth?

Pregnant women love to hear they shouldn't be changing the kitty litter, but will they love to hear the inconvenient truth about something else they shouldn't be doing? That there is another infection that needs to be avoided when pregnant--one that causes more disabilities than Down syndrome?

Congenital CMV (cytomegalovirus) is the number one viral cause of birth defects, yet few women have heard of this common virus. Why? Because few peope want to tell them they can catch it from their beloved toddlers--that the very act of kissing them on the mouth may just be the kiss of death and/or disability for their unborn child.

I’m a mother who didn’t know about CMV prevention until it was too late for my daughter Elizabeth (I ran a daycare center for young children and had a toddler of my own). Elizabeth was born severely disabled by congenital CMV in 1989. The moment I saw her, 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. 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 and me. Two months later, she died during a seizure.

I am the parent representative of the Congenital CMV Foundation and have spoken at two international Congenital CMV Conventions organized by the Centers for Disease Control and Prevention (CDC). After my first talk in 2008 in Atlanta, GA, mothers approached me afterwards holding their young children wearing hearing aids, or pushing them in wheelchairs. They all wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

Fewer than half (44%) of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 reported having counseled their patients how to prevent CMV infection despite these figures from 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 (See: http://www.cdc.gov/cmv/index.html).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

Why don't OB/GYNs routinely warn their patients? An OB/GYN quoted in FitPregnancy magazine (June/July '08) said, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

In addition, many OB/GYNs don't realize the prevalence of congenital CMV. In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “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.”

"Primary infection during pregnancy accounts for over 90% of severely affected babies and approximately 75% of women with a primary infection during pregnancy acquire CMV from their own child under two years of age,” said Stuart Adler, M.D., Professor of Pediatrics, Microbiology and Medicine and Director of Infectious Diseases at the Children’s Medical Center, Virginia Commonwealth University Medical Center. Dr. Adler has specialized in CMV infections among women and children for over 28 years and has published extensively on this topic.

Despite these statistics, according to the CDC, "CMV does not spread easily. Less than 1 in 5 parents of children who are shedding CMV become infected over the course of a year...In the United States, approximately 30-50% of women have never been infected with CMV. About 1-4 of every 100 women who have never been infected with CMV have a primary (first) CMV infection during pregnancy. About one third of women (33 of every 100) who become infected with CMV for the first time during a pregnancy will pass the infection to their infant."

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. During pregnancy, there are steps one can take to reduce changes of contracting CMV, such as talking to your doctor if you expect to receive a blood transfusion. Most blood banks don’t screen blood for CMV.

Daycare workers and mothers of young children should take these special precautions:

  1. wash your hands thoroughly after contact with urine or saliva
  2. avoid oral contact with saliva or objects covered with saliva (such as cups, pacifiers, toys, etc.)
  3. talk with your doctor about whether you should continue to work in a day care center.
  4. 4. Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva

I am asking the public for advice on how I can reach people who work in daycare centers or have a child enrolled in one. Some centers post flyers mentioning the need for careful hygiene when working with young children--but not many. Until OB/GYNs (and pediatricians) make it a standard practice of care to educate women of childbearing age on CMV prevention, I feel the public needs to do something.

Mothers of children affected by congenital CMV are so upset the medical community didn't find a way to warn them of the precautions to take so they could make up their own minds if they still wanted to share a mouth kiss with their toddlers or work in daycare centers with children under the age of two and a half. I believe knowing the precautions to take after wiping a runny nose or picking up toys covered in saliva can help prevent the kind of suffering my daughter Elizabeth endured.
The medical community is working on a vaccine and there is also a study currently underway to see if receiving CMV hyperimmune globulin (HIG) will prevent congenital CMV infection. They are looking for women who would like to be tested for the disease.

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.
or contact:
Brenna Anderson, M.D., M.Sc.
Women & Infants Hospital of RI
101 Dudley Street
Providence, RI 02905
401-274-1122 ext. 7456

For more information about congenital CMV:

CDC site on congenital CMV: http://www.cdc.gov/cmv/index.html

CDC brochure discusses blood transfusions and working with young children: http://congenitalcmv.org/CDCbrochure.pdf

An article written by doctors I found very enlightening:

I am listed on the Congenital Cytomegalovirus Foundation site along with the doctors who specialize in Congenital Cthey are all willing to speak to you. Their e-mail address is linked to their name: http://www.congenitalcmv.org/foundation.htm

About me, Lisa Saunders:

Lisa Saunders lives in Mystic, Connecticut, with her husband and beagle/basset hound. A Cornell University graduate, Saunders is the parent representative of the Congenital CMV Foundation and speaks at international congenital CMV conferences ('08,'12) sponsored by the Centers for Disease Control and Prevention (CDC), Congenital CMV Foundation, and the National Congenital CMV Disease Registry. Most recently, she spoke at a conference sponsored by the Infection Control Nurses of Connecticut (April '13). Lisa is a consulting writer for Rockland Community College of New York, part-time history interpreter at Mystic Seaport, and the author of several books, including her humorous and touching memoir about her CMV-disabled daughter growing up beside her tomboy sister and a lazy, old devoted canine, Anything But a Dog! The perfect pet for a girl with congenital CMV. the book includes interviews with the country's leading congenital CMV experts and raises funds for CMV research and parent support if purchased through the The National Congenital CMV Disease Registry and Research Program. Saunders also raises congenital CMV awareness in her humorous and historical book, Mystic Seafarer's Trail, where she reveals her desire to become thin and famous like Amelia Earhart so people will listen to her CMV prevention message. In an effort to share the comfort she received from her father's fairytale after her daughter died from complications of congenital CMV, she also published Surviving Loss: The Woodcutter's Tale, which, in addition to raising congenital CMV awareness, includes comments on grieving from a licensed clinical social worker (it's available as a free e-book at: https://www.smashwords.com/books/view/283862
Lisa maintains the congenital CMV blog at: http://congenitalcmv.blogspot.com/
See Lisa on her two-minute USA 9 news interview about CMV at: http://www.wusa9.com/video/34235723001/1/Coping-With-CMV
To read about Lisa's CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
For more information about Lisa's work, visit www.authorlisasaunders.com or contact her directly at saundersbooks@aol.com

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