Stories about: Berlin heart

Alina’s story part III: Life after a heart transplant

FotorAlinaThe moment Alina Siman first opened her eyes after her heart transplant is a moment her parents will never, ever forget. “She saw her dad standing over her,” recalls her mother, Mary, “and she said, ‘Papa, Papa.’”

Alina had been through quite an ordeal over that past year. Born with a congenital heart defect that was surgically corrected in infancy, Alina had been growing and developing normally until the spring of her third year.

The active toddler’s seemingly strong heart began to weaken, and the situation rapidly became worse. Mary brought Alina to the Heart Center at Boston Children’s Hospital, where she was treated by the Heart Failure/Heart Transplant team and received a new heart after nearly five months of waiting and building strength on the transplant list. She remained a patient on the hospital’s 8th floor during her wait.

Saying goodbye to the team of doctors, nurses and other hospital staff who had cared for Alina for so long was bittersweet for the Siman family. “It was a mix of emotions,” Mary explains. “After so much time there, we felt more than ready to leave. But at the same time, leaving the hospital and all the great people who took care of Alina was kind of sad. We try to visit the floor where she stayed at least once a year.”

Mary says it took no time at all for Alina to regain her strength after her heart transplant and get back to all of her favorite activities: “She had energy to dance, sing, go to the playground and have fun!”

From a medical standpoint, though, re-adjusting to life at home in Honduras was a bit more gradual. “We took things one step at a time,” says Mary. “For a while, she still needed a feeding tube and weekly checkups at the local hospital. We had to keep away from crowded places so she could stay healthy. But Alina was just so happy to be at home! No more IVs, beeping sounds or interruptions during sleep.” Little by little, Alina started to eat more on her own. In two months, she was completely weaned from the feeding tube.

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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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