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HLHS

Our patients’ stories: Mickey’s got heart

by Guest Blogger on December 19, 2012

By Mary Kay White

Mickey

Our son Mickey has been coming to Boston Children’s Hospital his whole life. Actually, he’s been coming here even longer than that. He was diagnosed with a heart defect during an ultrasound taken the 20th week of my pregnancy. It was hard at first to tell what was wrong with his heart but the images showed there was a significant problem, so we began meeting with Boston Children’s doctors to establish a plan of action.

When Mickey was born it was confirmed that he had a congenital heart defect called a double outlet right ventricle with coarctation of the aorta as well as hypoplastic left heart syndrome and severe tricuspid valve disease.

Where a normal heart has four chambers, Mickey’s only has three. He was born without a left ventricle and a severely narrowed aorta, which is the main supplier of blood to the body; so many of his organs, including the lungs, weren’t getting the blood they needed to function properly. It was decided that his best chance at life would be a series of three surgeries to re-route the blood vessels from his heart to his lungs to make sure his body got all the oxygen it needed. Full story »

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People magazine profiles Children’s heart transplant patient

by Tripp Underwood on February 27, 2012

Have you seen this week’s copy of People magazine? It features the story of Avery Toole who was born with hypoplastic left heart syndrome (HLHS), one of the most rare and most devastating congenital heart defects. As a long-time nurse in Children’s Hospital Boston’s Neonatal Intensive Care Unit, her mother, Cheryl, knew Avery might one day need a heart transplant. What she didn’t know was the amazing relationship that she, her husband, Mike, and Avery would one day have with the family of the boy whose heart now beats in Avery’s chest.

Special thanks to KBTX for contributing to this story. To see more on the Toole/Lawyer connection, please visit their website as well.

To learn more about their incredible journey, watch the following video and grab the magazine on newsstands everywhere.

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Connected by little hearts

by Tripp Underwood on February 23, 2012

Jeffrey as an infant

When Jeffrey Cameron was born in 1996, he seemed to be a perfectly healthy baby. Then, at just ten days old, baby Jeffrey went into acute respiratory distress and was taken by air ambulance to a local children’s hospital where he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of his heart was underdeveloped and couldn’t pump blood properly.

After a dizzying round of meetings with doctors, Jeffrey’s parents, Lenore and Tim, were presented with a set of difficult choices: Jeffrey could have a heart transplant, undergo a series of three open heart surgeries, or they could let him die at home.

“The doctors outlined our choices for us, and their exact words were, ‘You have three options and they’re all not very good,’” Lenore says. “We were told that transplant hearts for infants were extremely hard to come by and the that the 3-staged surgery was experimental. They said even if Jeffrey lived he might not have any real quality of life after all the surgeries.”

Based on the information presented to them by doctors, Lenore and her husband were under the impression that there was little hope for Jeffrey. After agonizing over the decision, the Cameron’s brought Jeffrey home with them so the family could enjoy what little time they had together in the comfort of their own house. It was a devastating time for them, but as the days wore on and Jeffrey continued to fight, friends and family asked the grieving couple to consider getting a second opinion. They began researching other treatment centers and learned that Children’s Hospital Boston had been successfully treating HLHS since the early 1980s, and patients with the condition were routinely sent there from all over the world. Full story »

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The heart of innovation

by Scott Howe on February 14, 2012


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. Full story »

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Game changer

by Tripp Underwood on November 28, 2011

Jack Miller

Imagine for a moment that it’s 2001, and you’re Jennifer Miller. You’re pregnant with your second baby, and an ultrasound shows that his heart isn’t developing normally: In fact, the left side of his heart has a problem so significant it will stop developing normally from that point on. Your unborn baby has a severe blockage of the aortic valve, known as stenosis, which will lead to a rare and potentially fatal condition called hypoplastic left heart syndrome (HLHS) at birth.

Now imagine that you’re Jack Miller. As you float in the quiet darkness of the womb, your heart is the size of a grape and that troublesome valve that won’t deliver blood from the left ventricle of your body is only as big as the head of a ballpoint pen.

What happened next put the Millers on the front page of the New York Times and in TIME magazine.
Full story »

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Avery Toole was born with hypoplastic left heart syndrome (HLHS), one of the rarest and most devastating congenital heart defects. As a long-time nurse in Children’s Hospital Boston’s Neonatal Intensive Care Unit, her mother, Cheryl, knew Avery might one day need a heart transplant. What she didn’t know was the amazing relationship that she, her husband, Mike, and Avery would one day have with the family of the boy whose heart now beats in Avery’s chest. In honor of national Donate Life Month, this is their shared story.

Special thanks to KBTX for contributing to this story. To see more on the Toole/Lawyer connection, please visit their website as well.

Full story »

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Heart Month: Catching up with the Peerless family

by Tripp Underwood on February 18, 2011

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.” Full story »

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Happy Valentine’s Day. Appropriately enough, this heart-centric holiday falls right in the middle of National Heart Awareness Month, and we couldn’t think of a better way to celebrate than giving our readers a brief update about Parker Bolton, a Children’s Hospital Boston patient born with a congenital heart defect (CHD), called hypoplastic left heart syndrome (HLHS), and the face of Thrive’s Our Patients’ Stories section. (That’s Parker, smiling broadly over there on the left-hand side of this page.)

Since first visiting Children’s, Parker has grown significantly.

Parker first came to Children’s for open-heart surgery two and half years ago. At the time his health was questionable and his mother Casey knew very little about HLHS; it’s amazing how much can change in two and a half years.

Since his first surgery performed by Sitaram Emani, MD, of Children’s Cardiovascular Program, Parker has been growing consistently and his mom Casey has gone from knowing nothing about HLHS to becoming a heart advocate in her home state of New Hampshire. In fact, thanks to a letter writing campaign headed by Casey, New Hampshire governor John Lynch proclaimed February 14, Congenital Heat Defect Awareness day in his state, two years in a row. Full story »

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