Today, 2 1/2 year-old Avery Gagnon looks perfectly healthy and happy.
But Avery is only alive today because of a revolutionary therapy called mitochondrial transplantation that used her own mitochondria — small structures in our cells that act as the “batteries” powering our organs — to boost her heart’s energy.
Mitochondrial transplantation comes to the rescue of hearts suffering from ischemia, a condition of reduced blood flow that damages mitochondria. As a result of its energy-sapping effects, ischemia is especially dangerous for the frailest cardiac patients: infants with congenital heart disease like Avery. …
Tina Medina was not a sickly child, yet she grew up knowing something was physically wrong.
She had difficulty keeping up with the other kids in her sixth-grade class and couldn’t run without becoming breathless. Local physicians near her home in Moriah, New York, shrugged it off as asthma — until Tina’s heart stopped twice during a routine appendectomy. “I was told I had a severe heart condition and needed to see a cardiologist right away,” she says.
At 15, Tina was diagnosed with restrictive cardiomyopathy, a rare type of cardiomyopathy that causes the heart muscle to become stiff, making it difficult for the ventricles of the heart to properly fill with blood. Three years following her diagnosis, now a college freshman on her way to Syracuse University, she became severely ill with multiple episodes of congestive heart failure.
“The doctors I was seeing in Burlington referred me to Boston Children’s Hospital,” she says. “It was time to look at getting a heart transplant.”
Tina was listed for six months. She was in the cardiac intensive care unit at the University of Vermont Hospital in Burlington when she learned a heart had become available. “I had no perspective that this was a danger, or that this was a huge deal. I looked at it as, I am finally going to be able to run, be able to breathe and not be sick.”
Boston Children’s nurse practitioner, Patricia O’Brien, CPNP, vividly remembers standing in her kitchen, telephone in hand, scrambling to arrange a flight from Burlington to Boston. “We had a plan in place but it fell through, so we were desperately trying to figure out a way to get her here, and we did.”
Tina’s surgery was performed on Aug. 27, 1992. She was the 22nd heart-transplant patient at Boston Children’s, which performed its first cardiac transplant 30 years ago. …
Not just any kids — heart kids.
Seventeen years ago, in 1999, Allie and Logan were roommates in the Boston Children’s Hospital Cardiac Intensive Care Unit (CICU), fighting for their lives against heart disease.
They were both undergoing the first two — of three each — open-heart surgeries.
Elizabeth (Logan’s mom) and Amy (Allie’s mom) spent every available moment at the bedside with their new babies — chatting about hearts, hospitals and life. Some days were more difficult than others, and there were setbacks for both kids. …
My husband Mike and I will never forget the feeling of excitement we had the morning we were finding out if we were having a boy or a girl. It seemed like we had to wait an eternity, wondering whether we’d hear the words “it’s a boy” or “it’s a girl.”
Finally, the time came — and our nurse let us know we were expecting a BOY! After screeching from excitement and smiling from ear to ear, we quickly realized something was wrong.
Our doctor had noticed the left side of our son’s heart was noticeably smaller than the right, a sign that he had a condition called hypoplastic left heart syndrome, or HLHS. With HLHS, the left side of the heart is underdeveloped and unable to properly pump blood.
That day, our world immediately changed. Our minds were racing in every direction, and it seemed like we were literally living in a nightmare. We had plans of shopping for baby clothes and celebrating over a nice lunch, and instead we were meeting with doctors all afternoon and uncontrollably crying. It was this night we named our son “Vincent” (Vinny for short), which means “to conquer.” We needed a strong name for a boy who needed to overcome so much.