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!’”
Cecchin implanted a pacemaker, but Alina’s heart continued to weaken. She wasn’t tolerating much food because she didn’t have energy to digest it. All of her energy was spent on breathing and keeping her vital organs working.
Strengthening the heart
During the summer of 2011, at the age of 4, Alina was placed on the wait list for a heart transplant. She was hospitalized at the beginning of October to receive a medication that would help her heart, but she was not getting better. She had three cardiac arrests in a single week. Says Mary, “It was the worst experience of our lives.”
The heart failure team explained to Alina’s parents that their daughter’s heart would not be able to function on its own for much longer. Their plan was to implant a device called ventricular assist device, or VAD, that could improve her heart’s ability to pump and circulate blood.
Because Alina was so small and needed help with both pumping chambers—the left and right ventricles—the transplant team decided a Berlin Heart was the best treatment option. The Berlin Heart is a small VAD connected to a patient’s heart by cannulas, or flexible tubes, that re-route blood so it flows out of the heart’s struggling ventricles, through the pumping device, and back into the body. In this way, the Berlin Heart augments heart function by working with the heart instead of completely replacing it.
“Dr. Christina Vanderpluym explained to us how the VAD was going to work, and showed us some pictures so that we would have an idea. It was scary to think my daughter would have to be hooked up to a machine,” recalls Mary, “but we knew that if we didn’t do that, Alina would die.”
After a few weeks with the Berlin Heart, Alina was making significant improvements.
“She regained her strength,” Mary says. “She started eating again, and got her personality back. Alina loves to sing and dance and make other people laugh.”
But Alina’s transplant journey was not yet over.
Learn more about the Heart Failure/ Heart Transplant Program at Boston Children’s Hospital.