Alexa Horwitz and Eliot Greene have a lot in common. They’re both high school honor roll students. Eliot is his class president at Belmont Hill School, while Alexa is editor-in-chief of the school newspaper at Buckingham Browne & Nichols. Both are varsity athletes, even participating in similar sports—tennis for Alexa and squash for Eliot. They’re friendly, engaging and quick with a smile. And they’ve both undergone multiple open-heart surgeries at Children’s Hospital Boston, making them perfect candidates to pilot the Heart2Heart at Children’s Teen Mentoring Program.
The program—currently available in Cardiology—matches high school or college students who were born with heart defects with patients currently being treated at Children’s. It’s the first program of its kind involving face-to-face mentoring with both patients and parents. “The questions they have are the same questions we had,” says Alexa. “It’s easier to talk to someone who knows firsthand what you’re going through.” Full story »
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.
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 »
On February 14, the Innovation Acceleration Program will celebrate Children’s Hospital Boston’s rich history of innovation at the hospital’s first Innovation Day. Of all the groundbreaking discoveries and procedures that have taken place within Children’s walls, few have had the impact of the surgery performed by Robert Gross, MD, one summer’s day in 1938.
“If you look at the history of cardiac surgery,” says Children’s Associate Anesthesiologist-in-Chief Mark Rockoff, MD, who also chairs the hospital’s Archives Program, “it essentially all started with Dr. Gross.”
Gross’s patient, 7-year-old Lorraine Sweeney, from Brighton, Mass., came to him with a diagnosis of patent ductus arteriosus, a congenital heart defect consisting of a persistent abnormal opening between the pulmonary artery and the aorta. In 1938, it was generally a death sentence—one that would likely end with Sweeney dying of congestive heart failure before adulthood. Accepted practice dictated that surgery was not a survivable option. Gross, the chief surgical resident at Children’s at the time, disagreed.
After two years of successful animal experiments, Gross was certain that the defect could be corrected in a human being “without undue danger.” He lobbied for the opportunity to test his theory, despite skepticism from his peers, and direct opposition from William Ladd, MD, Children’s surgeon-in-chief, and Gross’s superior.
Undaunted, Gross waited until Ladd boarded a ship bound for Europe. Then, with the blessing of Sweeney’s mother, he put his career on the line and performed a revolutionary surgery—tying off Sweeney’s patent ductus arteriosus, allowing normal flow of blood through her heart. “Dr. Gross told me that if I had died, he would never have worked again,” Sweeney recalls. “He would have ended up back on his family’s chicken farm.” Full story »
Pierce Heilinger recently underwent a complex surgery at Children’s Hospital Boston that may have saved his life. The young patient’s story has resonated deeply with parents who use social media, and even though many of those people had never met the child or his family, that online support system was instrumental in bringing him to Boston.
Pierce has heterotaxy syndrome, a birth defect that may involve the heart and other organs. Normally the human body has organs that grow on both sides, like the lungs or kidneys, and others that develop on a specific side, like the stomach or liver. But with cases of heterotaxy one or more of those organs may be reversed, including the heart.
In researching her son’s condition, Pierce’s mother Jessamyn learned that despite being an extremely rare condition Children’s Hospital Boston has performed over 100 surgeries to correct heterotaxy syndrome in the past few years.
In her search she also came upon a group of internet-savvy parents—many who have children with heart defects— including several whose kids were treated at Children’s. Collectively these moms tapped into their individual social networks and through forums like Facebook, Twitter and blogs they were able to raise enough money and awareness around Pierce’s situation to bring him to Boston.
(Watch the following CNN coverage of Pierce’s journey to Children’s.)
Baby Pierce’s condition may be rare, but the strength and passion his mother showed in arranging his care is not. There are tens of thousands of parents whose children are battling illness, and like Jessamyn many are using social media to educate people about their conditions or support others facing similar situations. Individually these outlets represent a small portion of the Internet population, but together they have a powerful voice that can be heard by millions.
The movement that brought baby Pierce to Children’s is proof of their collective strength.
As the online experience becomes more personalized, this type of interactive communication will become more and more common. And for parents dealing with the stress of childhood illness that deeper connection to others who share their fears and frustrations can be very comforting. But like with all online medical information, these forums should be approached with a buyer beware mentality; health information is only as valuable as the source providing it. With so many medical sites and forums competing for digital readership, more than a few inaccurate pages have attracted followers.
Fortunately for parents interested in pediatric heart conditions, there’s The Heart Center at Children’s Hospital Boston’s Facebook page. Our page offers families a secure place to interact with each other and get plenty of factual information on pediatric heart health. It currently connects over 2,000 families and is monitored by a pediatric cardiology specialist who can direct people with specific treatment questions to the proper channels.
If information on heart health and treatment is important to you, or you are looking to connect with other families who have been touched by a pediatric heart condition, please join our page and help us grow the conversation online.
Boston Magazine recently released its 2011 Top Doc list, made up of the best 650 physicians in the Hub. Seeing as Boston is home to some of the greatest medical minds on the planet, the list reads like a prestigious who’s-who roster of talent; a medical dream team spanning every aspect of treatment, from surgery to research and innovation.
Broken into 57 different specialties, doctors included on the list are voted for by fellow medical professionals, meaning that the Top Docs have not only gained the respect of the public and media, but of their peers as well.
Children’s Hospital Boston is proud to announce that over 10 percent of the entire list was made up of our staff, many of whom will be familiar to Thriving readers.
In 2004 Children’s Chief of Cardiac Surgery,Pedro del Nido, MD, was the first person to use the da Vinci surgical robot to fix a defect in a child’s heart, using child-sized tools of his own design. Read about another family whose child was also saved by Dr. del Nido’s surgical expertise and steady hands.
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 »
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.
Do you have a Children's Hospital Boston story you'd like heard? By sharing your Children's story you can be a great source of inspiration and encouragement to families who are going through similar situations. And it’s a great way to find support by connecting with others. Share your story today »
Alexa Horwitz and Eliot Greene have a lot in common. They’re both high school honor roll students. Eliot is his class president at Belmont Hill School, while Alexa is editor-in-chief of the school newspaper at Buckingham Browne & Nichols. Both are varsity athletes, even participating in similar sports—tennis for Alexa and squash for Eliot. They’re friendly, engaging and quick with a smile. And they’ve both undergone multiple open-heart surgeries at Children’s Hospital Boston, making them perfect candidates to pilot the Heart2Heart at Children’s Teen Mentoring Program.
