Meet Lyla Rose

LYLA ROSE’S STORY

At our anatomy scan at 24 weeks pregnant we got news that turned our world upside down. They could not see our babies diaphragm and told us that she had CDH which we had never heard of before. They then told us that she was going to need life saving surgery and possibly life support once born. As any parent that has experienced this knows, hearing that you were not going to have a healthy baby at birth is extremely devastating. We were then referred to Boston Children’s Hospital for a second opinion. After our MRI we found out that our baby had a severe Left sided Congenital Diaphragmatic Hernia. She had a 70 percent chance of needing ECMO at birth and only 60 percent chance of surviving.

After meeting the amazing CDH team at Boston Children’s Hospital we started to plan our baby girls birth. We decided that to give her the best chance at survival we would have our girl via c-section at 37 weeks with adjoining ORs. She was put on ECMO at 2 hours old and then repaired at just 5 hours old. She was on ECMO for 18 days and intubated for 26 days. On the 26th day we were able to hold our little girl for the first time and hear her little raspy cry. It was such a beautiful and emotionally overwhelming experience because of everything she had already been through. 

One of the hardest parts for us was seeing her being weaned off of the Morphine and sedation. Seeing her going through the withdrawals and those side effects was heartbreaking. Once she was fully weaned we were able to move to inpatient where the long haul began. We started to try to bottle feed her and she would have a few days where she was doing great and then a few where she wanted nothing to do with it. A little over a month into that we decided that she needed a G-tube because she was having a hard time eating by mouth. She went in for another surgery to have the G-tube installed. 

Dad and I quickly learned how to care for our daughter with the G-tube and just 1 day shy of her 3 months we were able to take her home. I never thought the day would come but it did and looking back on it 3 months actually went by fast. It is extremely hard to have a medically complex baby but we have all the best support in the world to care for her. We are extremely grateful to everyone on her care team that cared for her and they are the reason why she is with us today. We are also grateful for the Fore Hadley Foundation and their generous gift to help support us during this difficult time. 

As told to Fore Hadley by Brianna Belise aka “Mom”

About the Fore Hadley Angels in the NICU Fund

Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Clare’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.