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.

Nearly four years later …

It has now been four years since Alina’s transplant, and she continues to thrive. While she remembers “the machine,” (the ventricular assist device that helped her heart pump when it was failing) she doesn’t recall much about her time in the hospital or her heart transplant. She returns to Boston every four months for routine follow-up care and has a cardiac catheterization (a minimally invasive procedure that allows doctors to see into her heart and assess how it is working) once a year.

Despite the lab work and pesky needles, Alina looks forward to visiting Boston because it always feels like a special trip. It helps that her two older sisters tag along—the three girls always have fun together.Alina with mom and sisters at BCH walk

She’s outgrown one of her favorite leisure activities in the hospital—putting on shows for her nurses, but Alina still loves performing for her family. “Now she likes to be the director of the show—everybody has to do whatever she says,” says Mary. An avid reader, Alina can’t go to sleep without poring over one of her favorite books, and mother and daughter keep up their tradition of daily bonding time by reading and cuddling together every night.

Alina loves to be active, and her preferred sports at the moment are soccer and ice skating. Her favorite subject in school is science, and she’s considering becoming a doctor when she grows up.

“If I had three words to describe Alina,” Mary says, “they would be: kind, loving and strong. I look back now at all we’ve been through, and it feels like she’s a different girl. I really admire her happiness and strength.”

 

Learn more about the Pediatric Transplant Center.