“When your child is in the hospital it affects everyone. I am thankful that Nemours recognizes this and has resources to support families through times of hospitalization and ongoing care.”
– Easton’s mom, Brandi
Easton was diagnosed at 20 weeks’ gestation with tetralogy of Fallot. I was being seen as a high-risk pregnancy due to advanced maternal age and previous miscarriage. When we discovered the heart condition, we began seeing Nemours Children’s cardiology [Nemours Cardiac Center] and I was connected with the OB team at Nemours [Advanced Delivery Program] with the plan being to deliver at Nemours with a scheduled C-section at 38 weeks.
But Easton had other plans. At 36 weeks, my water broke, and I checked in at our local hospital 1.5 hours away from Nemours Children’s Hospital, Delaware. Due to his prematurity and availability at the time to deliver at Nemours, I was transferred by ambulance to Christiana Hospital. On December 9, 2022, Easton came into this world, and this will forever be the scariest moment of my life.
Easton was born in severe respiratory distress. He was immediately intubated and taken to Nemours Children’s Hospital, Delaware to be further stabilized. At about 1 week old, his doctors at Nemours had planned for us to be discharged, then return at 4 months old to have his first open heart surgery. But again, Easton had other plans.
During the car seat test to prepare for discharge, Easton developed prolonged periods of apnea and the Nemours Cardiac Center team made the decision that Easton would need surgery before leaving the hospital. At 12 days old, Easton had his first open heart surgery. There were many unforeseen complications and days afterward he was put on ECMO. After nearly a month in the cardiac ICU (CICU) and stepdown unit — and after numerous setbacks — we were discharged home.
Time in the Hospital
Our time in the CICU and step-down unit was filled with many emotions. Every single doctor, nurse, respiratory therapist, social worker, food service worker, etc. was amazing. Easton spent his first Christmas in the CICU, and I will always remember the compassion of everyone, especially that day. Easton had one nurse named Maura who would dress him up in Christmas hats and put stuffed Christmas animals in his crib. She would do the small things to make sure he was comfortable and was so attentive to his needs.
During Easton’s stay at Nemours Children’s Hospital, Delaware’s Cardiac Center, I always felt he was under the best care. I was always informed of what was going on and all my questions were answered. The entire team at Nemours works incredibly together and treats your child like they are their own. You can tell everyone has a true passion for what they do. In September of 2023 we returned to Nemours for a second open heart surgery to replace a valve and the exceptional care was present again.
Advice for Parents
As parents of a child with a lifelong congenital heart condition the whole process can feel so overwhelming. At Nemours, we felt at home. Nemours is our family. We will forever be grateful to every single person who played a part in saving his life and allowing him to thrive as an almost 2-year-old. Nemours always gave us hope, even in the darkest days. My advice to other families going through this is to trust Nemours; trust they employ only the best medical professionals that will do everything they can to give the best care.
It is important to ask questions and ask for help when needed. Nemours helped our whole family. When your child is in the hospital it affects everyone. I am thankful that Nemours recognizes this and has resources to support families through times of hospitalization and ongoing care.
I am humbled by this experience, and I am truly grateful that Nemours is there for us for all the days to come.
