Stories about: Fetal Cardiology Program

Hope for Kevin’s heart: Five-year-old shines after novel treatment for Ebstein’s anomaly

Kevin, who was born with Ebstein's anomaly, practices his dance moves.As the lights dimmed and Pharrell Williams’ “Happy” blasted from loudspeakers, Kevin Nolan III took to the stage for his very first dance recital. Sporting striped pants, a turquoise bow tie and a black top hat, Kevin joined his class in performing two hip-hop jazz routines to a packed house. Kevin’s mood was perfectly in step with the song’s lyrics.

“He had so much fun,” says Kevin’s mom, Laura. “He said he can’t wait to get on stage again.”

While a first dance recital is a big deal for any 5-year-old, it’s especially poignant for Kevin, who was diagnosed prenatally with Ebstein’s anomaly, a rare heart condition that causes leakage of the tricuspid valve and backup of blood flow into the heart. Kevin also had pulmonary valve regurgitation, which was stealing blood flow away from his essential organs. His condition was so severe that when it was first discovered during a prenatal ultrasound, doctors at a hospital in Boston said he might not survive.

“We met with a heart specialist who told us we should just say goodbye,” says Kevin’s dad, Kevin Jr. “He said nothing could be done.”

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Prenatal diagnosis sets James up for success

james-tetralogy-of-fallotI remember it like yesterday. Pregnant with my first child, I went to my 9-week scheduled ultrasound not really knowing what to expect. I heard a little baby’s heartbeat in my belly! I was blown away.

When you go for your 18-week ultrasound, make sure your baby’s heart is checked. A simple scan can change everything. ~ Elizabeth

At the 18-week scan, it appeared that the baby only had one kidney. The doctor seemed to think that everything else was normal, but he told me I had the option to make an appointment at Boston Children’s Hospital for a fetal echocardiogram. My husband had to work that day, so my mother came with me. I truly was not concerned.

Little did I know that my life was about to change forever, and all because of a simple scan that I almost didn’t receive.

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Looking back and ahead: The heart that made history

Jack makes history with fetal cardiac intervention

In the early morning of Sept. 11, 2001, Jennifer Miller was preparing to make history. She lay in pre-op, ready for the Boston Children’s Hospital Fetal Cardiology team to perform the world’s first fetal cardiac intervention on her unborn son.

Two weeks earlier, at her 18-week screening ultrasound, Jennifer and her husband Henry were told their son would be born with hypoplastic left heart syndrome (HLHS), a life-threatening heart defect where the left ventricle is small and underdeveloped. If born with HLHS, their son would immediately undergo multiple open-heart surgeries to repair his heart and, later, may need a heart transplant.

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Why it’s important to ask about your baby’s heart during an ultrasound


Did you know that at least half of all babies born with a heart condition are not diagnosed during pregnancy? Heart defects can seriously impact a child’s health, but knowing ahead of time will allow you to find the right people who can help. In some cases, prenatal detection can lead to earlier treatment for the baby.

Watch this short video to learn what to ask at your 18- to 22-week screening ultrasound to make sure your baby’s heart is healthy. If you don’t feel comfortable asking the questions yourself, download the questions and share them with the person performing your ultrasound.

Taking a few extra moments at your ultrasound is an important first step to managing your child’s health. Your baby might not be born yet, but they’re already counting on you.

Explore bostonchildrens.org/fetalheart for more information and resources.

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