Strength in Service: Nicole’s Story

My husband and I were at a routine prenatal ultrasound when we learned something was wrong with our unborn baby. At 22 weeks gestation, the baby was diagnosed with a congenital heart defect called coarctation of the aorta. Living in the Philadelphia area, we immediately turned to Children’s Hospital of Philadelphia (CHOP) for care. Fortunately, CHOP’s Fetal Heart Program was practically in our backyard, but we would have traveled any distance to receive the best fetal heart care in the country. I was followed by Dr. Jack Rychik and the Fetal Heart team for the remainder of my pregnancy. My daughter Olivia was born in the Garbose Family Special Delivery Unit on June 2, 2014.

Olivia underwent her first heart surgery at 4 days old. Dr. Thomas Spray repaired her coarctation of the aorta by removing the narrowed section of the aorta and then sewing the ends back together. The surgery was successful, and Olivia was discharged home at 10 days old. She continued to be followed by her CHOP Cardiac team regularly. At 12 months, Dr. Rychik discovered a mass under Olivia’s aortic valve, known as a subaortic membrane, which needed to be monitored carefully every six months. (Read Olivia’s story here.)

In March 2021, Olivia had her second open-heart surgery — this time to have the subaortic membrane resected with Dr. Jonathan Chen. Once discharged, Olivia developed postoperative pericarditis and was seen outpatient every few days to monitor the fluid on her heart. After attempts to reduce the fluid with medication, Olivia was readmitted to CHOP for a catheterization procedure with Dr. Jonathan Rome to drain the fluid around her heart. While Olivia’s second open-heart surgery was successful and her heart is now at a normal baseline, she will continue to be followed by cardiology for the rest of her life. It’s important to me that Olivia understands she will need to be vigilant about her cardiovascular health and advocate for herself as she grows.

Growing up with CHD can cause a child and family to struggle with their new reality. In addition to cardiac care, children with CHD often need supplementary psychosocial, developmental or behavioral support. Getting involved with the heart community and the children’s hospital helps families to understand what is happening in the field and how they can advocate for better CHD outcomes. For this reason, I’ve been active in CHD advocacy and fundraising for CHD research since Olivia was born. I’m also a team captain for the Cardiac Center’s annual Philly Spin-In fundraising event, and I’m an active member of the CHOP Cardiac Center Family Advisory Council. I’ve also helped Olivia grow comfortable sharing her journey with CHOP partners, at fundraising events and with her peers. She now eagerly joins me in fundraising and advocacy efforts for CHOP and for the CHD community — often bringing her three brothers along for support.

Thanks to the wonderful care Olivia, now 8, has received at CHOP’s Cardiac Center since her prenatal diagnosis, she is able to explore her interests in gymnastics, dance, theater, horseback riding, skiing and softball. We’re confident that whatever lies ahead in Olivia’s CHD journey, CHOP will be there to support us every step of the way.