Recipient Stories

By Cassandra FergunsonMommy to SofiaDandy-walker Syndrome, Hydrocephalus, EpilepsyBorn October 2019 We found out that our second daughter, Sofia, had Dandy-walker Syndrome and Hydrocephalus at our 22-week ultrasound. It was a hard pill to swallow. She was born having seizures. At 6 months old she had a trach surgically placed because her seizures and brain malformation…

Ana GerryMommy to AmayaAlobar HoloprosencephalyApril 17 – May 6, 2024 I found out I was pregnant in late 2023. At my 12-week ultrasound we were told that the baby’s brain was not developing properly. It wasn’t until the next week that we had a meeting with a specialist who told us about our daughter’s prognosis.…

By Lindsey BobbittMommy to WoodsonHypoplastic Left Heart Syndrome; Heart TransplantBorn September 2022 Our heart journey began in May 2022 at our anatomy scan. Woodson is our rainbow baby after losing our second daughter in August 2021 during the second trimester. I think I just assumed the pregnancy with Woodson would be fine because we had…

By Marisa BaeseMommy to AnabelHLHS (Hypoplastic Left Heart Syndrome), Down Syndrome T21August – October 2018We learned about Anabel’s severe heart defect and chromosome abnormality during the 20-week ultrasound. We were referred to specialists in St. Louis and saw them monthly until learning she would need to be born early at 34 weeks 5 days on…

By Mia WoodsMommy to FableBackwards Heart; Single Heart VentricleBorn December 2023 I was 20 weeks pregnant when we found out about Fable’s diagnosis – a backwards heart and single heart ventricle. At 36 weeks, I went in for a checkup and my baby’s heart rate was 280. I was quickly rushed to OB emergency where…

By Britney BoyerMommy to SebastianHypoplastic Left Heart SyndromeBorn May 2023 When I was in my third trimester of pregnancy, I was on my way to an OB appointment, hit a patch of black ice, spinning four times and hitting two trees. I crawled out of my car to wave down another vehicle and call an…

By Christina BryantMommy to Da’LayaInterrupted Aortic Arch Type B, large VSDNovember 2019 – February 2020 I got pregnant when I was 17 and did everything to ensure I had a healthy baby and pregnancy. My son was born with a hole in his heart and unbalanced chromosomes. They flew him to St. Louis 12 hours…

By Nicole LattaMommy to AmeliaCongenital Heart Defect – Transposition of Great ArteriesBorn in 2024 When my husband and I found out we were pregnant, we were over the moon excited, but also slightly nervous to be parents for the first time! Who will our little one look like? What will their personality be like? How…

By Desiree JoynerMommy to RaidenHypoplastic Left Heart Syndrome and 16.1 chromosome deletionJune 24 – August 1, 2024 From the start I always wanted a boy. When I found out I was pregnant in October of 2023, I couldn’t believe it. I was so happy to find out his due date was in July because my…

By Lisa SmithMommy to Aidan & ThomasMonochorionic Twin Pregnancy, sIUGR, born premature2024 At just 17 weeks pregnant with twins, we learned we had a monochorionic twin pregnancy (sharing one placenta) that resulted in selective intrauterine growth restriction (sIUGR). Because of this, there was a chance that the smaller baby (baby A/Aidan) would not continue to…