Stories about: Second opinion

Less is more: Second opinion spares Sam from risky invasive surgery

tethered spinal cordLike many moms, Brenda Jackson worried about the transition to middle school for her son Sam. He had had mysterious wetting accidents ever since potty training. Doctors had diagnosed an overactive bladder and tried everything — behavioral interventions, medications and dietary changes.

Nothing worked. Fortunately, Sam attended a small Montessori school where all the kids knew and accepted each other.

But as he was getting ready for fifth grade, the specter of middle school, and the teasing that comes with early adolescence, loomed. “That’s a new ball game,” says his Brenda. “We knew we had to take care of this.”

Because Sam also had constipation, the urologist at his Midwestern children’s hospital sent him to a gastroenterologist to see if addressing it would reduce Sam’s wetting accidents. The urologist put him on a medication meant to stop the spasms that were making him lose bladder control. It didn’t work.

It was such a relief to know that Sam was able to have a less invasive procedure. Boston Children’s made a very stressful process easier and had the confidence to take care of it.

Sam’s doctors and parents continued to search for answers. A dimple on the boy’s lower back suggested something wrong with his spinal cord, so Sam was referred for an MRI of his spine.

“We got a call the next morning that Sam had a thoracic syrinx [a collection of fluid inside the spinal cord’s central canal] and that we needed to see a neurosurgeon,” says Brenda. “The neurosurgeon at our hospital had never seen one.”

The local radiologist and neurosurgeon thought the fluid was compressing the nerves that controlled Sam’s urinary tract.

After two more MRIs, the doctors recommended surgery for the syrinx. It would involve inserting a shunt (tube) inside Sam’s spinal cord to drain the fluid into his abdomen — a highly invasive operation that carries a risk of causing paralysis. Plus, shunts often fail over time and have to be replaced.

Something didn’t ring true for Brenda. Her skepticism grew. She researched Sam’s condition and found few pediatric hospitals had published anything about it. One of those that did was Boston Children’s Hospital.

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Chronic pancreatitis: Bently says he’s ‘ready for a new belly’

 

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Bently Barnes (center) with Dr. Victor Fox and Dr. Amit Grover, co-directors of the Pancreatic Disorders Program

Four-year-old Bently Barnes needed to get ready. He opened the closet door, reached for his camouflage backpack, then scanned his bedroom for the essentials.

He grabbed his favorite stuffed animal named, “Marshall,” a truck, tractor and his most prized possession – his blanket. He placed them in his backpack with care, zipped the travel bag and placed it next to his bed.

Bently told his mom he was packed and ready to travel from their home in North Carolina to Boston Children’s Hospital. And he was “ready for a new belly,” he said.

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Annabel’s journey: The story behind the movie ‘Miracles from Heaven’

Miracles from HeavenEight-year-old Annabel Beam was on a quest to find the perfect gift. During a 2010 trip from her Texas home to Boston Children’s Hospital, she asked her Mom to stop at the airport gift shop before boarding the plane.

Annabel perused the aisles, examining each item in the hope of finding a token of appreciation for her gastroenterologist, Dr. Samuel Nurko, director of the Motility and Functional Gastrointestinal Disorders Center.

Annabel spotted a cuddly teddy bear wearing blue doctors’ scrubs. She reached for the bear, squeezed its arm, and a musical rendition of “Doctor, Doctor, give me the news…” began to play.

Annabel’s grin spread from ear to ear. “I want to give this to Dr. Nurko, Mommy,” said Annabel.

The teddy bear symbolized the kindness and hope Nurko shared with Annabel while she managed the rare and chronic gastrointestinal condition pseudo-obstruction. And it remains a symbol of the long-lasting bond between Nurko and his young patient.

“It was a very touching moment,” Nurko says of the day he received the teddy bear. “I keep the bear in my office, and he watches over me.”

This was one of many trips to Boston Children’s to treat Annabel’s chronic and often debilitating condition.

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Jett’s story: A second opinion and a second chance

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Allie and Chris Taylor vividly remember the day their second son Jett was born.

“Jett was a gift to me — the one I fought and cried for,” Allie recalls.

Twenty weeks earlier, during a routine ultrasound conducted at a nearby hospital, Allie and Chris were told their unborn son’s kidneys were enlarged. Doctors feared the worst.

“They did a second ultrasound and told us my baby wouldn’t make it past 28 weeks gestation. We were told we should see a specialist but not to keep our hopes high.”

Allie and Chris were seen three days later at the Advanced Fetal Care Center at Boston Children’s Hospital. They met with a team of fetal and pediatric experts, including Dr. Richard Lee, co-director of the hospital’s Urologic Trauma Unit.

Lee shared his expertise and gave the Taylors hope.

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