Hannah: Congenital Heart Defects & Aortic Aneurysm

Nancy Crawford was shocked when an ultrasound showed that the baby she was carrying, her third, had a heart problem. More tests at the Nemours Cardiac Center confirmed that her developing baby had transposition of the great arteries, ventricular septal defect and hypoplastic right ventricle (when one of the heart’s lower chambers that pumps blood is missing or underdeveloped). Nemours Children's cardiologist Majeed Bhat, MD, made the diagnosis, explained the condition to the family, and worked on a plan of care.

When Hannah was born, she was transported right away to Nemours Children’s Hospital, Delaware in Wilmington, Del. She had the first of three planned surgeries and went home from the hospital after just a week. While still an infant, Hannah "sailed through" the next two stages of surgical repair, says her mom. 

A Surprising Discovery

At 6 years old, Hannah was growing well and seemed healthy when Dr. Bhat noticed a serious problem during at a routine check-up. Imaging studies showed that her pulmonary artery (which carries blood from the heart to the lungs) was working as her aorta (the large artery that carries blood from the heart to the body). That created an aortic aneurysm — a bulge in the aorta that had ballooned and was in danger of bursting. Cardiothoracic surgeon Christian Pizarro, MD, said Hannah needed surgery right away.

"When we met with Dr. Pizarro, he told us the surgery was risky but necessary, and we put our trust in him," recalls Nancy. The procedure to connect an artificial aorta was a complete success.

Onward & Upward

Hannah’s physical activity is a little limited. Climbing stairs, walking long distances, and dealing with heat are especially tiring. And as a child, she knew her condition meant she couldn’t participate in sports, which made her feel different from her friends. For a while, she didn’t want anyone to know about her heart problems.

Psychologist Erica Sood, PhD, counsels Hannah and many kids, teens and young adults coping with serious heart conditions. "Dr. Sood has helped her come to grips with her anatomy and how she feels about it — to understand that ‘This is me. This is what makes me different,'" says Nancy.

Hannah’s also enrolled in a drug study at Nemours to see if her stamina and energy can be improved by taking a vasodilator. That’s a type of medication that helps open blood vessels and make the blood flow easier. Hannah’s eager to participate in research that may help her feel better and may help other young people with cardiac conditions too.  

A Bright Future

Now Dr. Bhat, Dr. Pizarro and the cardiac center team only need to see Hannah once a year. She might need another surgery at some point in the future, but her repairs helped her throughout her childhood. A graduate of Strath Haven High School in Wallingford, Pa., Hannah goes to St. Mary’s College of Maryland. She plans to study biology and hopes to become a doctor. 

"Dr. Bhat is so astute and so caring. He has kept Hannah alive all these years," says Nancy. "And Dr. Pizarro's skill in a time of crisis literally saved her life. Dr. Sood's counseling helped Hannah gradually accept and make peace with her condition. The cardiac center and the hospital are just outstanding. There's no way to adequately express what Nemours means to us."