Stories about: cardiac surgery

Solving Addison’s puzzle: Uncovering a congenital heart defect

Addison-on-bike-trail1Addison is a smart, sweet and caring child who brings a smile to everyone she meets. She is known for her hugs and frequently doles them out to anyone and everyone. She loves elephants—and her heart is elephant-sized! However, until last fall, Addison’s heart was causing mysterious and persistent medical issues that prevented her from doing all the things she loves. Unbeknownst to my husband and me, Addison was born with a congenital heart defect.

As a baby, Addison thrived but always seemed to have something going on. She had issues with reflux and did not enjoy tummy time or sleeping on her back. Waking several times during the night is not uncommon for a baby, but Addison seemed to be waking in pain every hour or two. When she was 9 months old, a GI specialist diagnosed her with reflux, and as she grew into a toddler, Addison developed significant respiratory issues, including a croupy cough. Now when she woke up during the night, it was with severe coughing fits.

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SuperMason vs. complex congenital heart disease

“We want him to run and fall like any other kid,” says Adreana Duchesne, describing her approach to raising her 4-year-old son Mason. Adreana and her husband Jeremy know that even though their son has complex congenital heart disease, his lifestyle doesn’t need to be limited in any way.

“Mason is super hyperactive. He’s a maniac, he’s fresh; he loves to sing and dance and put on a show. He has a personality the size of Texas.”  He also has a scar the length of a ballpoint pen on his chest — the one visual reminder of his three open heart surgeries.

Adreana found out about Mason’s heart condition at her 20-week prenatal ultrasound near the family’s home in western Mass. “We were told to simply go home and grieve — that there was nothing we could do to save our son’s life. But we wouldn’t accept that.”

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The heart of innovation

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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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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