Meet Bernadette aka “Beni”

BENI’S STORY

During a routine scan at 34 weeks gestation, we found out that our baby had left sided CDH and a severe bowel obstruction. We met with our local maternal fetal medicine doctor and then our CDH team. We relocated to Cincinnati Children’s Hospital and Cincinnati Ronald McDonald House at 35 weeks gestation to await the arrival of our baby. It was very difficult to navigate all this with our 15 month old, June.

At 38 weeks, our baby girl, Bernadette “Beni”, was born. Her name means “strong and brave as a bear” and she spent everyday living up to it! She came into the world FAST, the doctor almost couldn’t catch her in time! She had some scares the first two days of her heart rate and oxygen dropping. They wanted to get her into surgery quickly, so at 2 days old she had her CDH repair and her bowel obstruction repair surgery. Within 5 days, she was off the ventilator and was on high flow oxygen. During a routine brain MRI, we found out the our Beni girl has two brain bleeds and suffered brain damage due to lack of oxygen. The brain bleeds are small and should heal as she gets stronger. Our doctor stated that the lack of oxygen could have been during pregnancy, when they resuscitated her shortly after birth, or while she was on the ventilator. There is no way of knowing. They told us that she is at high risk for cerebral palsy and developmental delays. This definitely was a shock to everyone and we are grateful for all the support we received from our family, medical staff and other families with CDH.

We spent a total of 31 days in the NICU. Beni came home with her NG tube and is currently still working on feeding because of issues with aspiration. Beni loves cuddles, walks in the stroller, and playing with her big sister June. We have a long road ahead of us, but we are so grateful to have had a much shorter NICU stay than expected.

As told to Fore Hadley by Peyton Massey-Adams 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.