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.
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.
While in Ghana, members of the team blogged about their experiences. The following excerpt was originally posted in the Children’s in Ghana Blog. Full story »
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 »
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. Full story »
The first thing you notice about Ann Louise Atherton (her real name is Hazel, but everyone calls her Ann Louise) is her eyes: playful, brilliant blue and sparkling with humor. When she throws a toy and you pick it up, she beams, knowing she’s hooked you into playing fetch. Sitting in her Princess stroller and playing with her mother’s iPhone, a small catheter tube by her hip is the only sign of the risky, life-saving heart surgery that Ann Louise went through before she was even born. Full story »
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The first thing you notice about Ann Louise Atherton (her real name is Hazel, but everyone calls her Ann Louise) is her eyes: playful, brilliant blue and sparkling with humor. When she throws a toy and you pick it up, she beams, knowing she’s hooked you into playing fetch. Sitting in her Princess stroller and playing with her mother’s iPhone, a small catheter tube by her hip is the only sign of the risky, life-saving heart surgery that Ann Louise went through before she was even born. 
