All Children's Hospital's collaboration with Johns Hopkins taking shape

ST. PETERSBURG — Soon after unveiling the Johns Hopkins logo on its marquee, All Children's Hospital admitted a 7-year-old child with an exceedingly rare genetic disorder.

Justin Hamilton arrived with his father and his treasured WWE action figures. His medical details had already been passed from his Hopkins doctors to their new partners in Tampa Bay, one of their first such collaborations.

The arrival of a third-grader who had just learned to ride a bike wasn't as high profile as other efforts to merge the institutions. Hospital leaders were focused on pairing All Children's physicians with Hopkins mentors to conduct research. And they were planning a new pediatric residency program, joint fellowships and recruiting faculty members.

But Justin didn't have years to wait for these alliances to launch.

"I call it the silent killer," said his mother, Pethy Dowe. "You don't see any symptoms. By the time you do, it's too late."

For several years, Hopkins physicians have treated Justin for adrenoleukodystrophy, or ALD, an incurable neurological disorder resulting in a buildup of fatty acids in the brain, impairing function. Its course is bleak: Eventually, ALD could steal from Justin the skills needed for math, his favorite subject. Then the seizures could start. Then death.

Justin's family saw the pattern with a cousin living in the Virgin Islands who died several years ago at age 15. His doctor sent a blood sample to the world-renowned doctors at Hopkins, who determined the cause was ALD.

The condition is linked to the X-chromosome that boys inherit from their mothers. Justin and another cousin tested positive. They began yearly visits to Hopkins, where doctors prescribed a low-fat diet, along with a special supplement called Lorenzo's oil, made famous by the 1992 movie.

During a Baltimore visit last winter — Justin's first time seeing snow — an MRI showed signs of the disease progressing. Doctors wanted to try a bone marrow transplant. Justin's home is in Deerfield Beach, so his doctors opted to work with the newest member of the Hopkins system, All Children's, the largest pediatric bone marrow transplant center in Florida.

"His transition was pretty much seamless," said Dr. Greg Hale, director of hematology and oncology at All Children's, who was in touch with his Hopkins colleagues by phone and e-mail. "As we get to know each other better, we can hopefully build that relationship into clinical treatment guidelines or clinical research protocols."

Meanwhile, other collaborations between the two institutions were just beginning. All Children's doctors were invited to work with Hopkins colleagues in a yearlong research training mentorship. Thirteen local applicants were selected on the strength of their proposals.

"People who are engaged in care find problems and things they want to solve. (But) they don't always know how to solve them in systematic way," said Dr. Jonathan Ellen, a Hopkins leader and physician-in-chief at All Children's. "If you want to be on the cutting edge of care, you want to have the best faculty and the best clinicians that make you world class. You need to have that kind of investigation going on."

Beginning with a weekend retreat in St. Petersburg, the Hopkins mentors offered guidance on research design, data collection and analysis. Their goal: for the All Children's faculty to develop projects to present at conferences in a year.

All Children's researchers are studying topics from repeat hospitalizations to how pediatricians feel about alternative schedules for childhood vaccines. They regularly connect with their Hopkins mentors by phone or Skype.

Another research group is set to begin next year. Hopkins and All Children's also have their sights set on a St. Petersburg-based pediatric residency program to start in 2013 or 2014. They are looking at specialized training fellowships, jointly centered in Baltimore and Tampa Bay, to grow research capacity.

None of this will happen quickly, said Ellen, who is recruiting Hopkins faculty to come to All Children's, especially doctors with research and teaching expertise.

"Johns Hopkins has been what it is for over 100 years — and it didn't get there waking up one day and just saying, 'We'll do it,'" he said. "We're working with a great clinical hospital, but to … make it one of us, which is our goal, I hope it's not going to be 100 years, but it's not going to be three."

Yet quietly, the alliance already has helped Justin Hamilton, who has been at All Children's since April, celebrating his eighth birthday there. His first bone marrow transplant was rejected, so this month doctors tried again. Justin got 10 days of chemotherapy, followed by a stem cell transfusion. His family won't know if it worked for 30 days.

And in the next month or two, All Children's and Hopkins hope to have running joint procedures for cancer and blood disorder treatments, so other Florida children have access to the same care they would receive at Hopkins.

As Justin battles the worst effects — hair falling out on his pillow, nausea, trouble eating even favorite foods like oatmeal — his family members are taking turns staying with him.

They know both institutions will become familiar places. Justin's cousin may need a transplant, too. And one day, doctors will have to help educate Justin's 13-year-old sister about the genetic risks involved in having children.

"All Children's and Johns Hopkins — they are going to be in our family for a long time," said Pethy Dowe, Justin's mother. "We have no choice."

Reach Letitia Stein at lstein@sptimes.com or (727) 893-3300.

All Children's Hospital's collaboration with Johns Hopkins taking shape 08/21/11 [Last modified: Sunday, August 21, 2011 12:05am]

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