I just moved to a new town. I called 3 OBGYNs, looking to establish care. I asked the same question: Do you do CMV testing for women who have a high risk of previous exposure looking to conceive? Two clinics had no idea what I was talking about. One clinic said testing is only done in specific circumstances after conception has failed and the family is ready for fertility treatment (They clearly did not understand the question either). The third clinic said yes, and this is how I chose my OBGYN in Waco. That is also when I knew I had to share Lillian’s Story.
As pediatric physical therapists, we are given a special gift of being let into a family’s life. Parents trust us to care for their children and we have the honor of watching some of the most resilient people grow, learn to move, and learn to PLAY. We get to help children reach unlimited potential and beat the odds. The gift of treating children is not something I take lightly. Lillian Grace is one of the many children I have had the joy of treating.
Lillian was born with CMV, many of you are asking what is CMV? CMV stands for cytomegalovirus. Lillian was born and sent home as a happy and healthy baby. Her parents became concerned when she did not reach her milestones around age 6 months and her head was smaller than average. The diagnosis of CMV came after her mother did extensive research asked for CMV testing, and fought to get her newborn blood spot tested from the state of Texas. The increased time for this testing delayed both diagnosis and the use of possible antiviral treatment given if the infection is diagnosed at birth.
Today Lillian is full of spunk, kind, funny, and amazing young girl. Nothing stops this girl, she can teach you a lesson about hard work. Thanks to lifesaving surgery at Texas Children’s, the world is wide open for her. She still has to fight the constant battle of managing seizure medications and “using lefty (her left arm).” If you think balancing soccer games for multiple kids is tough; try adding in rehab stays, constant appointments with specialists, and traveling cross country to ensure your child has tried every possible treatment. Lillian’s mother is the definition of advocate. She advocates for her child, she advocates for CMV awareness, and advocates for her wonderful family (I think she is a Wonder Woman).
Most of us have been exposed to CMV at some point and had the symptoms of a common cold if any symptoms. For a typical child, the virus is harmless BUT if you are first exposed to the virus as a pregnant woman, it can have detrimental effects on your unborn child. For Lillian, this has meant hearing loss, seizures (resulting in removal of half of her brain), and developmental delays.
Before my job at a Children’s Hospital I had never heard of CMV. I want to help change your story since according to the National CMV Foundation, only 9% of women know about CMV. 9% of women are aware of a virus that: “affects one in every 200 babies born each year (approximately 30,000 children annually), making it the most common congenital viral infection in the United States. Of that statistic, one in every five children born with congenital CMV will develop permanent health problems (roughly 6,000+ children) with as many as 400 infant deaths annually.” Symptoms may include hearing loss, vision loss, seizures, premature birth, liver complications, spleen complications, lung complications, small head, weakness, and lack of coordination.
Toddlers are often infected by CMV, which means if you have young kids with more on the way this is especially important for you. Many 1-5 year olds bring CMV home from daycare and SHOW NO SYMPTOMS. The following precautions are critical throughout your pregnancy even if other children you are around seem otherwise healthy and have no signs of illness or a cold.
If you are pregnant here are tips to follow to prevent CMV infection:
-Don’t share food or utensils with a toddler
-Wash your hands more frequently than usual, especially after coming in contact with a toddler’s bodily fluids (Changing diapers, feeding, bathing, or handling child toys)
-If you have older children try to kiss them on the forehead instead of the lips
-Don’t try to clean your child’s pacifier by putting it in your mouth
-Kids love to imitate mom! Make sure they aren’t putting your toothbrush or your utensils in their mouth.
-Know your status! You can ask your OBGYN to be tested for antibodies related to CMV and know if you are at risk of passing the virus along. This test is covered by most insurances. Pregnant women undergo routine screenings which often include: hepatitis B, hepatitis C, syphilis, H.I.V., rubella, chlamydia, and genetic diseases like Down syndrome and cystic fibrosis. Even though the likelihood of having a baby with congenital CMV is higher than for all of the above conditions put together, CMV is not included in any routine screenings.
Sometimes things happen, life and families turn out different than we planned, and we have no idea why. People often give many reasons for these challenges: so we can advocate and educate others behind us, teach us that life is a beautiful gift no matter what challenges we face, that God doesn’t give us more than what we can handle. In reality, birth complications are something you just can’t be prepared for, no one plans on spending their child’s early years in hospitals but so many families face this challenge every day. This January support the #1in33, all those children and families fighting for a life outside of a hospital, a life many of us take for granted. To all of the amazing moms keep sharing your stories to educate and support those behind you.
For more information on CMV please follow this link:
For more on Lillian’s story please read here:
About the author: Kelsey Baas, PT, DPT is a physical therapist and the owner of Compleo where she promotes happy, healthy, and pain free living for families and people of all abilities. She specializes in developmental pediatrics, scoliosis, and pediatric chronic pain. In her free time she loves exploring her new Wacotown life with her husband and dog, Collins.