The results indicated our baby had been infected with cytomegalovirus (CMV). We had never heard of CMV before. We were told that there was no way to know how our child would be impacted. The possible outcomes ranged from mild hearing loss, to cerebral palsy, to death. We were heartbroken that our child could have permanent affects from CMV. We went through the remainder of the pregnancy without a clear idea of what to expect, and it was truly terrifying. We used that time to seek out experimental treatment and to learn more about CMV.
We learned that CMV is a common virus, and most people will be infected at some point in their lives. The virus is usually harmless, but the impact can be devastating to immunocompromised individuals, as well as to babies infected before birth. Women who are infected with the virus during pregnancy can pass the virus to their unborn child, this is called congenital CMV. We learned that 1 in 200 infants are born with the virus in the United States, and 1 in 5 of those infants will have a permanent birth defect or health condition due to CMV. Ninety per cent of infants born with CMV will be asymptomatic but can develop symptoms months or years later. CMV causes approximately 400 infant deaths each year in the US. We do not screen all infants for CMV, although some states have required infants who fail their newborn hearing screening to be tested for CMV. Currently, there is no CMV vaccine. The only way to prevent CMV is through using good hygiene measures during pregnancy and while planning a pregnancy.
Only nine per cent of women have heard of CMV. At the time of my pregnancy I had been a nurse for eight years, and did not realise the impact CMV can have on pregnancy. CMV is rarely discussed, and is not a standard part of prenatal education.
Pippa, Amanda's daughter pictured above in a ballerina's dress and Pippa photographed smiling above
Today, our daughter is four years old. As many parents of children with disabilities can attest, Pippa is the light of our lives. CMV caused permanent brain damage in utero, resulting in many complications in her little life. She has diagnoses including: polymicrogyria (a condition where the brain develops many small folds), intellectual disability, developmental delay, epilepsy, hearing loss and more. She has trouble swallowing and has a feeding tube. She is non-verbal. Despite these challenges, she continues to be a happy and joyous child, and we are privileged to be her parents. We hope that her story can help educate pregnant women about the seriousness of CMV, and how it can be prevented.
I began working for the National CMV Foundation in January of this year, as the program director. My background is in public health nursing, and this work seemed like a perfect fit for me. Our foundation’s mission is to educate women of childbearing age about congenital CMV. Our vision is to eliminate congenital CMV in the United States for the next generation. We work to accomplish these goals through awareness activities and advocacy work. June is CMV Awareness Month, and our theme this year is: CMV Speaks. We want to speak out about this important cause of birth defects.
During CMV Awareness Month, I cannot help but think about all the lives that have been impacted by CMV, especially my daughter’s and my own. Pippa’s life and my life would be so different if it weren’t for this virus. Pippa should be running, jumping, and swimming. She should be telling stories about what happened at school. We must do better for future families.
Despite everything going on in the world, families affected by CMV are still here. Waiting for this virus to be discussed. Waiting for funding that is proportional to the devastation CMV causes. Waiting for a vaccine. Waiting for better treatment options. And waiting for a day when the burden of this disease is no more.
*Amniocentesis is a test you may be offered during pregnancy to check if your baby has a genetic or chromosomal condition, such as Down's syndrome, Edwards' syndrome or Patau's syndrome. It involves removing and testing a small sample of cells from amniotic fluid, the fluid that surrounds the unborn baby in the womb (uterus).
For more information about the National CMV Foundation and prevention tips please use the buttons below.
Rare Revolution Editor