Active, Sassy, and In-Control: Olivia’s Story

When Olivia was just four days old, she had open-heart surgery to repair her coarctation of the aorta, a congenital heart disease. Today, she’s a happy and active 3-year-old who loves to dance, sing, and play with her brothers.

Nicole and Curtis were at a routine prenatal ultrasound when they learned something was wrong with their unborn baby. At 22-weeks’ gestation, the baby was diagnosed with a congenital heart defect.

“Living in the Philadelphia area, we immediately turned to Children’s Hospital of Philadelphia (CHOP),” remembers Nicole. “We were so happy that CHOP was in our backyard.”

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Coming to CHOP

Nicole and Curtis met with Jack Rychik, MD, Director of CHOP’s Fetal Heart Program, which specializes in the detection, evaluation and management of fetal heart defects prior to a baby’s birth. The Fetal Heart Program is unique in that expectant families are cared for by a dedicated, multidisciplinary team.

Patients benefit from the expertise of the Cardiac Center’s pediatric cardiologists, cardiac surgeons, cardiac anesthesiologists, nurses and a social worker, all of whom often work hand-in-hand with CHOP’s maternal-fetal medicine specialists in the Center for Fetal Diagnosis and Treatment, genetic counselors, and other specialists throughout the Hospital.

Dr. Rychik conducted further testing and explained that Nicole and Curtis’ baby would need open-heart surgery shortly after birth.

“It was overwhelming, but we were confident in the surgical plan,” says Nicole. “Dr. Rychik was amazing and gave us hope.”

Open-heart surgery

Nicole was monitored by the Fetal Heart Program throughout the rest of her pregnancy. When it came time, Nicole gave birth to Olivia in the Garbose Family Special Delivery Unit, the first birth facility in a pediatric hospital designed for healthy mothers carrying babies with known birth defects. Moms can stay close, and babies are treated immediately after birth.

When Olivia was four days old, she had open-heart surgery to repair her coarctation of the aorta. In children with this condition, a section of the aorta — the main artery that carries oxygenated blood out of the heart to the body — is too narrow, and the lower part of the body does not get enough blood.

Because of this narrowing, the left ventricle of the heart must pump much harder than normal to move blood through the aorta to the lower body. This can lead to damage to the heart and high blood pressure in the heart and brain. It can also damage the organs in the lower body that don’t get enough blood.

Thomas Spray, MD, Chief of the Division of Cardiothoracic Surgery, performed the operation. He removed the narrowed section of the aorta and then sewed the ends of the aorta back together. The surgery was successful, and Olivia was discharged home when she was 10 days old.

Continued monitoring

Olivia continues to be monitored by Dr. Rychik. While she hasn’t had any major complications since her surgery at 4 days old, she may need a future intervention to remove material from under her aortic valve called a subaortic membrane.

Giving back

Olivia is now an active three-year-old with a lot of energy. She loves playing with her older and younger brother, and enjoys dancing, singing and nature.

“She’s a very sassy and spicy three-year-old,” jokes Nicole.

Nicole and Curtis are thankful to CHOP and have turned into strong advocates for the Hospital and cardiac health awareness. They actively fundraise for the Hospital and the family brings gifts and toys to children undergoing treatment.

“We are grateful to CHOP for our entire experience,” says Nicole. “That’s why advocacy is so important to us.”