CDH International’s featured patient of the week is CDH survivor Lyric Adams. Lyric is the son of Amanda and Chris Adams and they had this to share about their son:
“We got our CDH diagnosis for our son at our 20 weeks scan on Sept 24, 2019. We were devastated after losing three babies prior, including his twin in the first trimester.
Our local hospital gave us a 30% chance of survival and suggested we terminate or relocate to Philadelphia to be part of a trial surgery. We researched and a fellow CDH parent told us about Johns Hopkins All Children’s Hospital in Florida. We saw the YouTube video and the more we read the more we knew we had to move.
After our consultation in November of 2019, Dr. Kays gave us a 95% chance of survival and we started preparing to move from Pennsylvania to Florida. Thanks to our amazing family, friends, church, and community we fundraised through aluminum tabs – collecting 418 pounds between October and December – and extremely generous gifts of kindest from loved ones near and far. I quit my jobs in childcare, retail, and tourism to transition to full time remote teaching. My husband’s company graciously allowed him to come to Florida and work remotely so we could be together in the Ronald McDonald House.
We moved December 30, 2019 and welcomed our LCDH son Lyric Ron Adams on Jan 21, 2020.
He was operated on at 3 days old to have his diaphragm repaired and his liver, spleen, stomach, and intestines moved back to his abdomen. His heart was pushed completely to the right side of his body and his left lung was only 18% expanded at birth. After surgery it was about 23%.
Lyric spent 20 days in the hospital before being discharged and we brought him home to Pittsburgh, Pennsylvania on February 24, 2020.
We have been in self quarantine since returning home to help keep him away from germs and give his lung a chance to grow as much as possible. We are supported with his pediatrician, physical therapist, nutritionist and early intervention team.
Our son is our “Lyrical Miracle” and at almost 10 months old is kicking CDH in the teeth. He’s eating, crawling, sitting, standing, stepping, pulling up, and amazing us every day!”