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. …
It was just after midnight on an unseasonably warm Christmas Eve when Morre and Marcus stepped off the plane at Logan Airport. They carried precious cargo: their newborn daughter Madison needed emergency heart surgery at Boston Children’s Hospital.
Madison was the couple’s first child. Like most expectant parents, Morre and Marcus were overwhelmed with joyous anticipation as the pregnancy progressed. They decorated their baby’s nursery and picked out a name: Madison, which means “gift from God.”
But at Morre’s 20-week ultrasound, the couple’s joy was tempered by some troubling news.
Madison had complex congenital heart disease. The prognosis was not good.
Doctors near the family’s home in North Carolina first thought Madison had a disease called hypoplastic left heart syndrome, or HLHS, which means the left side of the heart is so underdeveloped that it can’t pump enough oxygenated blood throughout the body. After a follow-up appointment with a local pediatric cardiologist; however, Morre and Marcus learned there was more to the story. …
When their unborn son Silas was diagnosed with congenital heart disease at 22 weeks gestation, Montana and Michael Green knew he faced a long road. Though their primary concern was Silas’ health they also worried their son might face developmental delays, a common side effect following infant heart surgery.
Silas was diagnosed with double-outlet right ventricle (DORV) , a complicated abnormality in which the pulmonary artery and the aorta — the heart’s two great arteries — both arise from the right ventricle. This disrupts the flow of oxygenated blood throughout the body. DORV is often associated with other cardiac defects, such as a ventricular septal defect (a hole in the heart) or pulmonary vein stenosis (a narrowing or blockage of the passageway to the lungs).
Knowing Silas would need the most advanced cardiac care, Montana and Michael decided to travel from Cranston, Rhode Island, to deliver him at Brigham and Women’s Hospital in Boston. After birth, he was immediately transferred to the Heart Center at Boston Children’s Hospital, where he spent the first six months of his life. During that time, he had three heart surgeries and multiple cardiac catheterizations to correct his various anatomical issues and complications, which included complete atrioventricular canal defect and double outlet right ventricle. Today, at 6 months, Silas’ heart is functioning well, and his cardiac and developmental prognoses are promising.
My muscles are weightless, and my mind is empty. Outside the window, a pair of older Japanese women chat quietly. I close my eyes and breathe in the steam that floats up from the geothermal water beneath me.… knowing I won’t ever again waste a single heartbeat fills me with hope that while the sun is setting on this chapter, it will rise again brighter than ever in my future.
I’m sitting in a natural hot spring in Japan, a centuries-old tradition that is believed to have healing powers. I slide deeper into the onsen in quiet meditation and hope the mineral-rich water is doing what it’s supposed to.
I’m the luckiest girl in the world, I think and then stop. Luck didn’t bring me halfway around the world. A series of events, decisions, and my own two legs did. …