Stories about: Heart Center

Experience Journal: Coping with a child’s congenital heart disease

At 16 months old, Avery was diagnosed with an atrial septal defect — a hole in the wall between the heart’s upper chambers that required open-heart surgery to repair. ​

Shock, fear and pride were just a few of the emotions Avery’s parents Jessica and Andrew experienced throughout their journey coping with their daughter’s congenital heart defect (CHD).

The couple found it helpful to talk through their questions and feelings with other parents of children with a CHD, as well as with Avery’s caregivers from the Heart Center at Boston Children’s Hospital. Now with two years of recovery behind them, Jessica and Andrew generously pay it forward by sharing their experience and offering guidance to other families coping with pediatric heart disease.

Avery's journey with congenital heart disease.

 

The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Heart Experience Journal, created by the Department of Psychiatry and the Heart Center.

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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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Mending a ‘backward’ heart

Joe, who has congenitally corrected transposition of the great arteries , sits with his dog OdieThe first clue came with a murmur.

At a mere week old, Joe LaRocca was diagnosed with an extraordinarily rare heart defect. Both ventricles were reversed.

Fortunately, with this particular defect, the arteries are reversed too, essentially “correcting” the abnormality. That’s where it gets its name — congenitally corrected transposition of the great arteries (CCTGA).

In a normal heart, the demanding duty of pumping oxygenated blood into the body is handled by the left ventricle, and the right ventricle pumps blood a short distance into the lungs. But Joe’s heart was far from normal.

“The right ventricle is not meant to do the harder work,” says Dr. Elizabeth Blume, Heart Failure and Heart Transplant Program medical director at Boston Children’s Hospital. “Since the ventricles are reversed in patients with CCTGA, over time, this muscle tires out.”

For the past three decades, the team at Boston Children’s Heart Center has medically and surgically managed Joe’s condition. And at 33, his heart is still ticking.

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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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