When I was pregnant with Leah, at her 20 week anatomy scan I knew something was wrong. The sonographer had a look on her face that I will never forget but she couldn’t tell me around was wrong. The doctor called later to let me know Leah had fluid around her heart, fluid collecting in her abdomen, her liver was enlarged, and she was extremely small for her gestational age.

We were able to get into a perinatal medicine doctor in Rochester and they ran several tests to determine what was wrong. The result was congenital cytomegalovirus and there was no way to predict how severely the virus would affect Leah if she survived. Cytomegalovirus can cause brain damage, hearing loss, visual impairments, and motor delays.

We traveled back and forth to Rochester for sonograms and to discuss treatment options. The doctors in Rochester put me on an antiviral medication, but I had learned about an infusion treatment while researching options and hoped it would help save Leah. We traveled to The Fetal Center in Houston, Texas when I was 25 weeks pregnant and I was able to receive two infusions (one at 27 weeks and one at 31 weeks) and be monitored by the doctors in Texas before Leah was born. I delivered her in Texas as well. She was taken immediately to the NICU for assessment and spent 11 days there. After she was discharged from the NICU we stayed in Texas for two more weeks for follow up appointments. The doctors in Texas were happily surprised by how well she was doing and we were able to make the trip back to our home in New York.

Leah’s initial care team was made up of several specialists and required many trips to Syracuse and Rochester for the first few years of her life. Leah was also born with profound hearing loss as a result of the cytomegalovirus. She has had two cochlear implant surgeries. She needed to use hearing aids prior to being able to have cochlear implant surgery. When our insurance would not cover any of the cost for her hearing aids, Children’s Miracle Network was there to help. Children’s Miracle Network has also helped support us with the expense of mileage to and from her appointments. Leah receives auditory verbal therapy and play therapy to support her language and social development. Children’s Miracle Network helps us with copays and added expenses that are necessary to support Leah’s hearing, language, cognition, social skills and overall wellbeing. We could not be more grateful for the continued support of Children’s Miracle Network.