Re: Alleviate Human Suffering Caused by Congenital Cytomegalovirus Infection through Education and Newborn Screening Hon. Senators and Representatives,
We are three moms with stories spanning a quarter-century, but with the same message:
Most people will contract cytomegalovirus (CMV) at some point in their lives. Many people experience no symptoms, never know they have been infected, and are unharmed by the virus. But, for the unborn, CMV can be devastating and even deadly:
Congenital (present at birth) CMV is the most common congenital infection in the United States and causes death in an estimated 400 infants and permanent disabilities in 8000-10,000 newborns each year.i
This translates to 40 infant deaths and 800-1000 permanently disabled newborns each year in Texas, greater than the total number of newborns (600) diagnosed annually with all the core disorders on the Texas newborn screening panel combined.ii
Congenital CMV has a greater disease burden than does Down syndrome, spina bifida, sudden infant death syndrome, fetal alcohol syndrome, or congenital toxoplasmosis.iii
CMV is spread through contact with bodily fluids including saliva and urine. Simple hygienic precautions when carefully practiced by pregnant women reduce the number of congenital CMV infections.
The Centers for Disease Control and Prevention (CDC) and the American College of Obstetricians and Gynecologists (ACOG) both recommend CMV counseling for pregnant women.iv
Less than half of obstetricians counsel their patients about CMVv, and only about one in five women are aware of CMV.
Congenital CMV is treatable if diagnosed early. Antiviral drug therapy can aid normal brain development and help prevent hearing loss.vi
In 1999 the Institute of Medicine ranked the development of a CMV vaccine as a highest priority because of the lives it would save and the disabilities it would prevent, but CMV has eluded vaccine development efforts.vii
Jenny’s Story, 1990: My husband and I and our little boy were looking forward to the birth of daughter and sister, Caroline. My obstetrician prescribed prenatal vitamins, counseled me to avoid alcohol and the kitty litter box (toxoplasmosis risk) and gave advice on how to have a healthy baby.
My obstetrician even tested me to see if I had ever had CMV, but never told me that women who contract CMV for the first time when they are pregnant can pass multiple profound life-long disabilities to their unborn children and that this risk could be greatly reduced with simple precautions such as not sharing food from my plate or fork with other people, not kissing young children on the mouth or face, and sticking to good hand-washing habits. I was ignorant of CMV and Caroline was vulnerable to its devastation.
I contracted CMV for the first time while pregnant with Caroline, and Caroline developed a severe case. At seven-months pregnant, my family learned the news that Caroline would likely die or have multiple profound disabilities such as brain damage, blindness, deafness, seizures, and loss of motor control.
Fetal surgery and treatment with an antiviral drug at birth saved everything but Caroline’s hearing. Today at age 24, thanks to her timely diagnosis, treatment, early educational services from the Spring Branch Independent School District, and her hard work and determination, Caroline is a fine woman, a college graduate, and employed as a Geographic Information Systems Specialist.
A timely message of the dangers of CMV and simple hygienic precautions could have prevented this odyssey and cost of congenital CMV. Still, my family is one of the fortunate ones.
Caroline has been featured in various publications over the years, and she and I have spoken at programs concerning CMV and deafness, including at the 2008 Congenital CMV Conference at the CDC in Atlanta.
Sandra’s Story, 2011: While pregnant with my second child, I experienced a severe upper respiratory infection, fatigue, fever, and just couldn’t beat the illness. I just attributed it to being pregnant and raising a toddler. After several trips to the doctor and hospital, I was told that I had bronchitis. No one even suggested that I could have had a CMV infection.
Lillian Grace was born December 28, 2011, and was discharged from the hospital after four days, and we were told everything was just fine. However, by the time she was six months old, she was not reaching her milestones, had a small head measurement (microcephaly), was having multiple seizures daily, and was diagnosed with cerebral palsy. This prompted an MRI of the brain, which showed she had a condition called polymicrogyria, too many small folds on her brain.
Around 10 months of age we also found out our daughter had a profound unilateral hearing loss in her left ear. This was so frustrating because our daughter passed all newborn screens yet she was showing various disabilities that we felt should have been discovered earlier. Lillian’s seizures eventually led to her requiring a lifesaving, radical brain operation called a hemispherectomy.
After thorough and expensive genetic testing led to no results and no indicated abnormalities, my own research finally led me to the probability of congenital CMV. By piecing together information through online support networks, I learned that CMV is a known cause of polymicrogyria and hearing loss. I requested our daughter’s newborn bloodspot from the state of Texas to have them test it for CMV. After a painstaking process and wait, the CDC confirmed that Lillian’s newborn blood spot did test positive for CMV infection. By this time she was almost a year old.
The hardest part about this journey was the delay in treatment and diagnosis for our daughter. Had we known about the CMV infection either in utero or at birth, Lillian could have had access to early treatment and intervention. I often wonder if it could have prevented her hearing loss or could have helped her brain to develop normally if we were able to start the antiviral treatment in utero or shortly after her birth. A simple blood or urine test could have opened up a world of possibilities for our daughter.
My family does not want other families to endure the pain and diagnostic dilemma that my family faced.
Farah’s Story, 2014: I had never heard of CMV until one hour after my daughter, Madeline Leigh, was born. From the time we discovered in June 2013 that we were pregnant, our family was ecstatic. At 20 weeks, we learned that our second child would be a girl, a sidekick for big sister Sophie. Maddie was due to arrive on Valentine’s Day, 2014.
All the ultrasounds looked great and all the follow up doctor visits were routine until at the 38-week check-up, when my obstetrician noticed that Maddie was small. She strongly recommended that we schedule the delivery for the next morning. We still had no idea that anything serious was wrong until an hour after Maddie’s birth. Our neonatologist told us she suspected Maddie had congenital CMV because of her skin rash, low birth weight, and inflamed liver, and that more tests were needed to confirm the diagnosis.
What? What is CMV? How did our poor baby get it? I had never been counseled about the harms of CMV and the simple hygienic precautions I should have taken to avoid infecting myself and my baby. CMV counseling on the day Maddie was born was too late for our family. Maddie was too sick to be helped with treatment.
Maddie came home with us after 10 days in the neonatal intensive care unit. Two days later she passed from this earth after only 12 short days of life, less than two weeks after we first heard of this common virus.
Shortly after her death, I founded Maddie’s Mission, a grassroots organization in Katy that strives to raise awareness about the potentially harmful effects of CMV during pregnancy and to educate families about prevention measures. Our website, http://www.maddiesmission.org, contains information about CMV and our family’s commitment to educate people about CMV.
Thousands of other CMV families have been telling their stories, too, but CMV awareness is still abysmally low. It is time for policy to increase prevention and increase early intervention when infection occurs. In 2013 the Utah Legislature unanimously passed HB 81, the first CMV bill in the country to become law. The law directs the Utah Department of Health to create a public education program and directs medical practitioners to test some infants.viii The Utah program is producing results, and all three of us will be traveling to Utah to present our stories at the CMV Public Health Conference in Salt Lake City in September.ix Dr. Gail Demmler-Harrison, an internationally recognized expert in congenital CMV infection with the Baylor College of Medicine in Houston, is on the Scientific Advisory Panel for the conference.x We are looking for authors and sponsors of a CMV education and universal newborn screeningxi bill for the 84th Texas Legislative Session. Please contact one of us, and we respectfully request a meeting with each of you about this important public health problem. You can also contact Dr. Gail Demmler-Harrison at firstname.lastname@example.org . Additional contact information for Dr. Demmler-Harrison is listed at the first “cc” below.
We encourage each of you to sing Happy Birthday using “babies” as the name while washing your hands with soap and water. If women who are pregnant and considering becoming pregnant would be counseled to wash their hands in this manner after changing a diaper and wiping a nose or drool, it would go a long way to preventing congenital CMV, and more babies would have birthdays and more babies would be able to hear the Happy Birthday song sung to them.
We will sign off for now with this message that CMV Moms frequently use for CMV awareness education: cCMV-safe XO! (Kiss on the top of the head and big hug!). Rather than kissing young children on the face, which is so natural for mothers, they should give their toddlers a cCMV-safe XO, a kiss on the top of the head and a big hug, because an ounce of prevention is worth an unborn baby’s life and well-being.
Thank you for your service to our state.
Jenny Meeden Bailey
Farah Armstrong cc:
Dr. Gail Demmler-Harrison
Professor Department of Pediatrics, Section Infectious Diseases
Baylor College of Medicine
National Congenital CMV Disease Registry
1102 Bates Street, Suite 1150
Houston, Texas 77030
Caroline Meeden Bailey
Current Members of the Senate Committee on Health & Human Services
i H.R. Baer, et al. Survey of congenital cytomegalovirus (cCMV) knowledge among medical students. J Clin Virol 2014; 60: 222–242. Abstract accessible at http://www.ncbi.nlm.nih.gov/pubmed/24794398 Last accessed 7/20/2014.
Cannon M, et al. Washing our hands of the congenital cytomegalovirus disease epidemic. BMC Public Health 2005; June (5):70. Accessible at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182379/ Last accessed 7/20/2014.
ii Texas Department of Health Services website. https://www.dshs.state.tx.us/newborn/faqs_nbs.shtm Last accessed 7/20/2014.
iii Jeon, Jiyeon, et al. Knowledge and awareness of congenital cytomegalovirus among women. Infect Dis in Obstet and Gynecol 2006 80383. Accessible at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1779612/ Last accessed 7/20/2014.
iv American College of Obstetricians and Gynecologists [ACOG]. Perinatal Viral and Parasitic Infections. Practice Bulletin No. 20. Washington, DC. ACOG; 2000.
v Centers for Disease Control and Prevention. Knowledge and practices of obstetricians and gynecologists regarding cytomegalovirus infection during pregnancy – United States, 2007. MMWR Weekly 2008; 57(January (03)): 65–8. Accessible at http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm Last accessed 7/20/2014.
vi Kimberlin D et al. for NIH-NIAID CASG. Six months versus six weeks of oral valganciclovir for infants with symptomatic congenital cytomegalovirus (CMV) disease with and without central nervous system (CNS) involvement: Results of a Phase III, randomized, double-blind, placebo-controlled, multinational study. Abstract accessible at
https://idsa.confex.com/idsa/2013/webprogram/Paper43178.html Last accessed 7/20/2014.
Cytomegalovirus. 29th Edition Red Book 2012 Report of the Committee on Infectious Diseases, Policy of the American Academy of Pediatrics.
vii Vaccines for the 21st Century: A Tool for Decisionmaking. Institute of Medicine Report 1999. Obtainable at http://www.iom.edu/Reports/1999/Vaccines-for-the-21st-Century-A-Tool-for-Decisionmaking.aspx Last accessed 7/20/2014.
viii See http://le.utah.gov/~2013/bills/static/HB0081.html . Last accessed 7/20/2014.
ix For information and to register for the conference access http://cmv.usu.edu . Last accessed 7/20/2014.
x Demmler-Harrison G. Congenital cytomegalovirus: public health action towards awareness, prevention, and treatment. J Clin Virol 2009; 46S: S1-S5. http://www.maddiesmission.org/#!articles-and-interviews/c1p1u Last accessed 7/20/2014.
xi See Cannon, Michael J., et al. Universal newborn screening for congenital CMV infection: what is the evidence of potential benefit? Rev. Med. Virol. 2014. Abstract accessible at http://www.ncbi.nlm.nih.gov/pubmed/24760655 Last accessed 7/20/2014.