Cecelia : Finding Joy Through Heartbreaking Loss

By Lisa DickmannMommy to CeceliaTrisomy 18stillborn in July 2017 I got pregnant with our forth child in October 2016. I had an ultrasound in March 2018 where they found that the baby was measuring 4 weeks too small. In April 2018, at 29.5 weeks pregnant, she was diagnosed with Trisomy 18. I was in the…

By Danielle LenzeMommy to ElizabethTrisomy 18Born still in April 2024 Tim and I found out we were pregnant in January and told the kids on March 8th after our first doctor’s appointment. We had blood work done at that appointment for genetic testing and to find out the gender. We went home and told the…

Testing after she was born revealed that Aurora had a gap between her valve and heart, and that she had Trisomy 18.

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.…

Learn about hydrocephalus in babies and children and the symptoms of this neurological condition known as “water on the brain.”

Get answers to the question “What is Trisomy?” if your baby recently received that diagnosis in the womb.

A Congenital Heart Defect (CHD) is one of the most common birth defects among infants. 

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…