Catching up with Abby

scoliosisWhen you look Abby DiCocco, a 13-year-old from Clifton Park, N.Y, it’s hard to believe that the rising eighth grader, avid swimmer and budding triathlete ever had any problems with her spine.

Abby was diagnosed with scoliosis when she was in first grade and had surgery to remove a Chiari malformation, an abnormal meeting between the brain and spinal cord, at Boston Children’s Hospital.

One year after that surgery, Abby’s orthopedic surgeon Dr. John Emans, director of the Boston Children’s Spinal Program, prescribed a brace to treat her scoliosis. However, despite everyone’s best efforts, Abby’s scoliosis progressed as she grew, and her curve reached 65 degrees by age 11.

That’s when Emans suggested a new option — MAGEC surgery. Remote-controlled magnetic rods are surgically implanted into the spine and periodically lengthened to treat early-onset scoliosis. Abby was the first at Boston Children’s to receive this surgery, which reduced her curve from 65 to 10 degrees.

That was two years ago.

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Kailyn’s smiles, Kailyn’s strength

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Photo credit: Samantha K Photography

On April 1, 2012, my husband Kevin and I found out we were expecting our second baby. We were very surprised as our daughter Kendall was just seven months old at the time. At the same time, we were very excited we would have two kids so close in age.

At our 20-week ultrasound, we had another surprise — this baby had a cleft lip.

We were pretty upset when we left the ultrasound. We couldn’t stop asking, “Why us? What did we do wrong?”

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The ride of my life


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.

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Gretchen’s story: A blue baby and living legend

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Gretchen with husband Phil and son Josh

“I was very lucky to be born when I was,” says Gretchen Hall, talking about her congenital heart disease.

Born a “blue baby” in 1960, Gretchen’s parents were told that her chances of living very long were low. Her parents prayed she would be with them for a year.

Gretchen was born with cyanotic heart disease, the combined result of a number of different cardiac defects that ultimately cause low-blood oxygen level. (When babies aren’t getting enough oxygen, their skin appears blue, which is why they are called “blue babies”). In the 1960s, only a few hospitals in the U.S. were doing heart surgery on children born with congenital heart disease.

Shocked and afraid, her parents didn’t know where to turn. Joel and Ruth Hensel lived in rural Michigan, far from any medical center that could perform the complex surgery that might save Gretchen’s life.

After consulting with doctors near and far, they followed the recommendation of their family general practitioner who told them to go to Dr. Michael DeBakey, a surgeon experimenting with a number of cardiac procedures, in Houston, Texas. In the summer of 1964, Joel and Ruth left their two other young children at home and packed Gretchen, then 3, in the car for the long drive to Houston.

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