Stories about: congential heart defect

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Alexa Rand today

How do you know if you’re making the right medical decision for your child?

Nine years ago, Rosamaria Rand and her family faced this difficult question. While pregnant, Rosamaria learned that her daughter, Alexa, had a severe heart defect known as hypoplastic left heart syndrome (HLHS), where half the heart fails to develop properly. Doctors told the Rands that most children born with HLHS go through a process known as single ventricle palliation or “SVP”— a series of three surgeries to reconstruct the heart so it can function with a single working ventricle. They also let the Rands know that only about 50 percent of patients treated this way survive to adulthood.

Alexa had her initial procedure in utero (before she was born) at Boston Children’s. At this time, her parents learned about an alternative treatment method to SVP that can help patients with HLHS. Under development at Boston Children’s, this relatively new approach held the promise of helping children born with HLHS avoid long-term complications and improve their overall health.

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Children’s global health: treating the young hearts of Ghana

This November, a team of 21 medical specialists, including several from Children’s Hospital Boston, traveled to Kumasi, Ghana to care for children with congenital heart defects. As members of the non-profit organization Hearts and Minds of Ghana, the team is part of an ongoing effort to treat patients and train and educate local Kumasi medical professionals with the hopes that a self-sustaining pediatric cardiac center can soon be established in the region.

Lead by Francis Fynn-Thompson, MD, surgical director of Children’s #1 ranked Heart Transplant program, surgical director of our Lung Transplant Program and a surgeon in our #1 ranked Cardiac Surgery Program, the Children’s team explains why they volunteer their time and efforts to the people of Ghana.

While in Ghana, members of the team blogged about their experiences. The following excerpt was originally posted in the Children’s in Ghana Blog.

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Heart Month: Catching up with the Peerless family

You may remember Renee Peerless from the ABC documentary Boston Med, which aired last summer and featured several Children’s families and clinicians. After Renee’s unborn son, Sam, was prenatally diagnosed with a congenital heart defect known as hypoplastic left heart syndrome (HLHS), an ABC camera crew followed Renee constantly, highlighting the care required to help a baby born with a heart defect survive the delicate first few days of life. In the following post Renee relives the experience and talks about how the fetal diagnosis of Sam’s condition made an extremely trying situation easier to deal with.

Jake sees the pregnant Renee for the first time in months (photo courtesy of ABC.)

For Renee Peerless, the decision to have genetic testing done during a routine ultrasound had more to do with her husband Jake than her unborn child. Jake, a solider stationed in Iraq, was overseas for most of Renee’s pregnancy, so she initially saw the testing as a chance to have more images to share with him. “Jake felt like he was missing a lot so I wanted more pictures of Sam to send him,” she says. “I knew testing was a good precautionary measure, but my real motivation was getting a few extra ultrasound pictures.”

But as it turned out, the tests revealed that there was something seriously wrong with Sam’s heart. In a matter of minutes Renee went from giddy anticipation to the terror of learning that her unborn son’s health was in serious jeopardy. “It was like my whole world was falling apart,” she says.

The next week Renee met with a pediatric cardiologist in her home state of Connecticut and was told that Sam had a congenital heart defect called hypoplastic left heart syndrome (HLHS), where the left side of the heart is underdeveloped, limiting its ability to pump blood.

Sam had two open-heart surgeries before he was a week old.

“It was so much to take in all at once,” she says. “I didn’t even know what a congenital heart defect was and all of the sudden it was all I could think about.”

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Screening high school athletes for heart disease: How much can – and should – we do?

stockphotopro_42143077XQA_football_tacklBy Mark Alexander, MD, associate in Cardiology

I was asked to write this post just before a 17-year-old hockey player died after a practice in Haverhill. While we don’t know exactly why this young man died, it’s indicative of a typical case of sudden cardiac arrest. He seemed healthy and vibrant and collapsed suddenly just after exercising.

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