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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Matt’s story: No obstacles

amputeeWhen Matt Freitas walked into TA Fitness, a warrior gym in Weymouth, Massachusetts, with his mother and a doctor’s note, co-owner Dave Cavanagh wasn’t sure what to expect. Then he thought, “If he’s coming into the gym with one leg, he must know what he can and can’t do.”

It’s seems as if the 15-year-old ninja warrior competitor and lacrosse goalie can do just about anything. He’s a straight-A student, Boy Scout, wrestler and local celebrity.

“Everyone knows Matt,” says Jenny Lawler, co-owner of TA Fitness. “I’ve seen younger kids whisper to their parents, ‘Is that Matt Freitas?’”

Last year, Matt, who loves the television series “American Ninja Warrior,” persuaded a friend to accompany him to the gym. The friend never returned. Matt works out there as often as he can fit into his jam-packed schedule. He’s joined the staff and often helps out with kids’ parties on weekends.

It is hard to miss Matt’s lanky 6’2” frame, easy grin and quirky sense of humor. Most of all, there’s the quiet determination that comes from facing an obstacle far tougher than any he’ll encounter on a warrior course.

One month before his 12th birthday, Matt was involved in a head-on car crash in Maine. His right foot was trapped under the front passenger seat and nearly severed. He was rushed to Maine Medical Center and underwent a below-the-knee amputation.

Matt’s parents Melissa and Scott lobbied to have their son transferred to Boston Children’s Hospital. “We were very happy with the care Matt received at Maine Medical, but we wanted Matt at Boston Children’s not only because it was closer to home, but also because it’s Boston Children’s. When he was transferred one week after the accident, it was a gift.”

Seventy visitors flooded Matt’s room the weekend he was transferred. While Matt welcomed the company, he set his sights on other priorities.

He wanted to get back to the lacrosse field.

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Jack’s journey managing Robin sequence

Pierre Robin Sequence, Jack Ryan
Jennifer and 8-week-old Jack

Jennifer Ryan is a disability expert. She started her career doing home visits with drug-addicted and abused babies, then ran a center and started a program for kids with autism and now works in a collaborative elementary school.

But nothing prepared this new mom for the challenges she would face with her own child.

“It’s completely different when it’s your own,” she says now, after her son Jack was treated at Boston Children’s Hospital’s Cleft and Craniofacial Center for a group of birth defects known as Pierre Robin sequence or just Robin sequence.

For the first and second trimesters of Jennifer’s pregnancy, everything looked perfect. At 30 weeks, a blood clot put Jennifer in the hospital and her pregnancy at risk. As a standard precaution for any high-risk pregnancy, more ultrasounds and tests were ordered. Doctors were concerned about one of the scans, so Jennifer was sent to Boston Children’s for an MRI.

That’s when things got complicated.

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Gorham-Stout disease: 12 years, two patients and one innovation

Dan and Alex, a few weeks after Alex's surgery
Dan and Alex, a few weeks after Alex’s surgery for Gorham-Stout disease (Photo Susanne Malloy)

On a snowy Saturday in January, two mothers sat sipping tea and conversing about their sons. It was an ordinary scene, but the women’s conversation was far from ordinary.
The scariest thing a doctor can tell you is ‘I don’t know. I’ve never seen this before.’ To find two doctors who treated this before and then to see Dan doing so well is tremendously gratifying. ~ Susanne Malloy

Susanne’s son Alexander Malloy, 14, had been recently diagnosed with Gorham-Stout disease. Gorham-Stout, also referred to as “vanishing-bone” disease, triggers a process that destroys bones and typically affects a single area like the shoulder, jaw hip, rib or spine.

“It was shocking,” recalls Susanne. An MRI earlier that week, prompted by a worsening of her son’s mild scoliosis, had shown Alex was missing bones in his spine and likely had Gorham-Stout.

After the MRI, Alex’s orthopedic surgeon, Dr. Lawrence Karlin, reassured Susanne and her husband Tom that Boston Children’s Hospital would have a plan for their son.

As Susanne and Tom digested the diagnosis, she began thinking Gorham-Stout, a rare bone disease of the lymphatic system reported in about 300 patients, sounded familiar. “I can’t have heard of it before,” she told herself.

The feeling persisted, so she called a friend, who said, “That sounds like Dan Ventresca.”

Twelve years earlier, Dan, who lived a few streets away from the Malloys in Hingham, Massachusetts, had been diagnosed with the same disease. Like Alex, Dan’s disease was located in his spine. Susanne’s friend called Dan’s mother.

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