Stories about: Heart Week

Our patients’ stories: Treating Haven’s pulmonary atresia

Haven

When Molly Foley was first pregnant, she admits she knew very little about congenital heart defects, or how they could affect her unborn daughter, Haven. But, around 20 weeks into her pregnancy, Molly discovered that heart defects were very real—and very scary—when an ultrasound revealed that Haven had pulmonary atresia. Also known as “blue baby syndrome,” pulmonary atresia is a condition in which the heart’s pulmonary valve is abnormal and doesn’t open.

“It never occurs to most people that their baby could have a heart defect,” Molly says, noting that many parents are all-too aware of other potential birth defects like cleft lip/palate, Down syndrome and spina bifida. “It just doesn’t come across many people’s radar screen.”

And while children born with pulmonary atresia may be rare, there is a wide range of more commonly occurring heart conditions that can affect babies. In fact, when viewed as a whole, heart defects are the number one most common type of birth defect.

Following Haven’s diagnosis, Molly says that the staff at the Boston Children’s Hospital Heart Center “worked very hard to make me psychologically prepared for what was coming next.” Doctors told Molly that Haven needed a series of three surgeries—the first coming when Haven was just four days old. In addition, Haven needed to be placed on an ECMO (Extracorporeal Membrane Oxygenation), a life-supporting technology that replaces a critically ill child’s heart and lungs. “The ECMO was invasive,” Molly remembers. “We weren’t sure what to expect.”

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The heart of innovation

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.”

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Heart week: A new heart for Sara Dumas

Sara Graduation June 17 2010 020Last night, Boston Med featured Children’s patient Sara Dumas as she underwent a life-saving heart transplant. If you missed the episode, watch it in full here. Our robust Facebook page was also bombarded by comments during the show; click here to read them but watch out for spoilers!

Here, Sara shares what it was like to undergo a major medical procedure and lengthy hospital stay–with camera crews capturing it all the while.

When I was four years old I was diagnosed with a heart condition known as hypertrophic cardiomyopathy (HCM). Because the disease is genetic, doctors suggested other members of my family get tested as well; shortly after both my father and brother were diagnosed with the same condition. I was stable for most of my childhood, but when I was fifteen my condition became so bad that it was interfering with my life. Soon after, my brother and I were referred to Children’s Hospital Boston to be evaluated for heart transplants.

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Heart week: Francis Fynn-Thompson video interview

Don’t forget to watch Boston Med tonight, to see Children’s Hospital Boston’s Francis Fynn-Thompson, MD, perform a life saving heart transplant on his teenage patient Sara Dumas.

In the following video Fynn-Thompson shares his thoughts on what it was like to work as a surgeon under the close scrutiny of ABC’s cameras.

Make sure you check in with us tomorrow, because Sara Dumas will share her story in an exclusive post for Thrive. The 18-year old heart transplant recipient will comment not only on her condition and Children’s experience, but also what it was like to undergo such a major medical procedure and lengthy hospital stay with camera crews capturing it all.

As always, check out thesmallandmighty.org, for exclusive, in depth and behind-the-scenes material as it relates to Children’s participation in Boston Med.

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