Stories about: VAD

Saving six: Life before and after transplant

An organ transplant is a life-changing event extending far beyond the operating room, the clinics and the hospital walls. Read about five children, one young adult and their families, whose lives were forever changed by the Pediatric Transplant Center at Boston Children’s Hospital.


Lydia’s liver transplant, a mom’s gift

Living donor liver transplant recipientDawn Cavanagh gave her daughter life twice — first when she was born and, again, when she gave 13-year-old Lydia a piece of her liver last summer. The donor-approval process, which occurs with Boston Children’s partner Lahey Hospital & Medical Center, required hours of medical screening, including an interview with a social worker, who asked if Dawn expected anything in return for being Lydia’s liver donor. “And I said, ‘Of course I expect something,’” explains Dawn. “’I expect her to live a long and happy life, and I expect her to be with me for a long time.’”

More than a year after her liver transplant, for Lydia’s birthday, Aug. 1, the Cavanagh family went on Lydia’s Make-A-Wish trip, a Disney cruise to the Bahamas. “We had so much fun,” says Dawn. “She’s a happy kid. She has dreams. She wants to be a transplant nurse, and she wants to work on 10 South at Boston Children’s Hospital.” 

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Alina’s story, Part I: Looking back on a heart transplant

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Heart failure in children is a sneaky condition. The symptoms can be subtle, and the situation often worsens quite quickly. That was the case for Alina Siman. Though Alina, now 8,  was born with congenital heart disease, her parents thought she had escaped the complications of her condition.

Alina was born in Miami, Florida after a fetal echocardiogram diagnosed her with a coarctation of the aorta (a narrowing of the aorta) and a ventricular septal defect (a hole between the walls of the heart’s lower pumping chambers). She had surgery soon after she was born to correct her heart’s anatomy and for a few years, she seemed to be progressing just fine. However, Alina’s list of medications kept getting longer. When she started to develop arrhythmias, or irregular heartbeats, her doctors were in disagreement about the optimal medication and treatment plan.

The difference in opinions made Alina’s parents uncomfortable, and they decided to look for a second opinion. They researched online and found that Boston Children’s Hospital was and still is the #1 Hospital in the U.S. for Cardiology and Heart Surgery. In February 2011, the International Office arranged for Alina to see Dr. Frank Cecchin, an electrophysiologist. After seeing her, Cecchin knew that Alina’s condition was more than arrhythmia and he summoned the Heart Failure/Heart Transplant Team. Dr. Kevin Daly, Dr. Christopher Almond, and Dr. Elizabeth Blume all saw Alina that day. “We didn’t know how serious her condition until she was seen by four doctors in one day,” says Mary, Alina’s mother. “We thought, ‘Why the Heart Failure/Transplant Team? She doesn’t need a transplant!’”

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He wears his heart on his… back?

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Last winter, Deyven Ferreras started to feel a bit weak. He was extra tired during the day and had trouble catching his breath before falling asleep. The 18-year-old from Providence, Rhode Island, attributed the weakness to the fact that he wasn’t exercising as much as he did in the warmer months, when he regularly played basketball with his friends. Over spring break, however, the situation grew dramatically worse. Deyven felt nauseous and assumed he had the flu — until a regularly scheduled doctor’s visit revealed he was actually in heart failure.

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Freedom in waiting: A ventricular assist device gives Aidan’s family independence

Aidan

When Aidan was just 8 months old, his parents Patrick and Tavina received shocking news—their son had hypertrophic cardiomyopathy, a rare but serious disease that affects the muscle of the heart. Given his young age and severity of his condition, the early prognosis was bleak.

“Things didn’t look good at first,” remembers Patrick. “We were steeling ourselves for the real possibility that Aidan wouldn’t make it to see his first birthday.”

But, heart condition or not, little Aidan was a fighter, and with minimal medical management his condition stabilized. Over the years, he grew stronger and was seen periodically by doctors from Boston Children’s Hospital’s Heart Center who monitored his heart health. However, even though Aidan had fared much better than originally hoped, there was never any doubt that his condition would worsen with time—when his doctors spoke about a heart transplant, it was in terms of when not if.

A turn for the worse

In November 2012, with Thanksgiving just a few days away, the last thing on 10-year-old Aidan’s mind was a big turkey dinner. He had suddenly gotten sick—vomiting, shivering and feeling very tired. His worried parents took him to their local hospital where he was admitted and treated for a virus. After six days in the hospital, Aidan was feeling better and was scheduled to go home the following day when his health took a dramatic turn. That night, Aidan suffered a stroke, which doctors believed may have been triggered by blood pooling in his heart, likely the result of his left ventricle not being able to pump with any real strength.

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