Over the past few decades, more and more children with congenital heart defects have been receiving life-saving surgery soon after birth. As surgical techniques improve, some children who would have died within the first few weeks of life are able to survive — but many still have residual heart failure. Transplant is often the optimal therapy for such patients, but the number of hearts available to transplant has not changed much over the last several years.
“The number of patients listed for transplant is much greater than the number of donor hearts,” says Dr. Elizabeth Blume, director of the Heart Center’s Heart Failure program. “Due to this limitation, we’ve dedicated an entire service to optimizing care for children living with heart failure.”
In recent years, the Heart Failure team has made significant strides in slowing the progress of heart failure in children. In some cases, disease progression has been slowed enough for the patient to be taken off of the heart transplant list for being “too well.”
Each Monday for the next four weeks, Thriving is highlighting a very special Heart Center patient who was once listed for transplant, but was removed from the list thanks to successful medical management of her heart disease.
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!’” …