Cooperation between Israelis, the Palestinian Authority and the US National Institutes of Health has saved the life of Jummana, a 17-year-old girl from Nablus who had been suffering from a serious and rare endocrine problem.
Working together under a new model of treatment called “Bring the Patient, Bring the Surgeon,” her PA doctors to referred her to Rambam Medical Center, Haifa, where she arrived in a wheelchair suffering from extreme pain in her bones and was diagnosed with hypophosphatemia (extremely low phosphate levels). The cause of the condition, however, left her physicians puzzled.
Following an examination, pediatric endocrinologist Prof. Dov Tiosano realized they were dealing with the hormone FGF23, which is secreted from the bones.
Jummana underwent successful surgery at Rambam last week and it is expected that the collaboration will now benefit others suffering from the rare condition.
FGF23 only came to the attention of physicians in the past decade. Over-secretion of the hormone generally is related to a genetic disease resulting from consanguinity – the marriage of two first cousins, as are Jummana’s parents. However, testing revealed no genetic problems.
Tiosano believed the only other possible cause could be a tumor, and contacted a colleague in the NIH who helped clinch the diagnosis – a rare tumor just 0.5 centimeter in size in Jummana’s palate that was consuming massive amounts of calcium and phosphorous from her bones.
Rare in adults, such a tumor in a teen was virtually unheard of.
Diagnosis made, the NIH turned to Prof. John A. van Aalst, director of the plastic surgery division at the Cincinnati Children’s Hospital for advice regarding the best-qualified hospital to perform the surgery, which was complicated by the patient’s age and need for complex endocrinological follow-up.
Van Aalst said there were only four possibilities, with Rambam the clear choice when he realized that Jummana’s endocrine exams had already been performed at the Haifa hospital. In addition, he had particularly strong connections with the deputy director of Rambam’s oral and maxillofacial surgery department, Dr. Omri Emodi, as well as physicians and surgeons in Nablus.
“Why did we choose Rambam?” said van Aalst. “Because of all the connections here, it was simpler for the family, and in the end safest, because she had a major endocrine problem that would be quite complicated to treat once the tumor was removed.”
When Jummana’s doctors in the PA were contacted, they made a referral to Rambam via the PA Health Ministry, and while bureaucracy was being handled, Emodi set up the multidisciplinary team needed for the operation, which included the patient’s endocrinologist, a hemato-oncologist and the pre-planning to create the necessary prosthodontics.
It was a lot of preparation for a fairly routine surgery that would take just 90 minutes.
This included bringing her doctors from Nablus to Rambam to observe the procedure and learn more about her condition so they could better follow-up with her in Nablus and gain valuable knowledge for treating similar problems if diagnosed in the PA.
Van Aalst flew over for the surgery, as well.
“Omri didn’t need me for the surgery, but I wanted to be there. I had a personal sense of responsibility. I said to Omri: ‘You set the date and I’ll be there.’” He disclosed that nothing would have happened had it not been for the story within the story – Van Aalst’s mother was born in Tulkarm, near Netanya, and he is closely connected to family throughout the PA and West Bank so he wanted to contribute to the advancement of medicine there.
For the past decade, van Aalst has been working together with two surgeons from the West Bank, both of whom had happened to be Jummana’s doctors. In addition, he is a friend of Emodi.
“Every six months, I have been going to the West Bank and Gaza to operate. At the end of my time there, I visit Rambam to work with Omri. Three years ago, I introduced the surgeons from the PA to Omri; this is now their third trip here to Rambam.”
When it was decided that Jummana was going to come to Rambam, the team invited her Nablus physician to write the medical report. Because the doctors knew each other and were known to the authorities involved, it was easy to make the arrangements for the PA doctors to come with girl, van Aalst explained.
Now that the tumor has been removed, “We hope to be able to restore the calcium and the phosphate to her bones,” Tiossano said. “Given that her bone density is extremely low (a -8 Z-score), building her bones up again is the real challenge. This will be a long journey, but we are on track.”
Many doctors are interested in Jummana’s recovery because of the rarity of the condition. She will soon be released, but will return to Rambam for examinations; NIH rehabilitation experts will visit during follow-up to see how she is doing and learn how the intervention is helping her to return to normal bone density and function.
This is the goal of the “Bring the Patient, Bring the Surgeon” since bringing the patient’s own surgeon and physician helps create self-sufficiency in the ongoing care of the patient as well as in the care of future patients with similar problems.
Meanwhile, the life of a five-year-old boy from Syria was saved after undergoing open-heart surgery at Schneider Children’s Medical Center for Israel, in Petah Tikva.
He suffered from a congenital defect that caused his skin to turn blue because of inadequate oxygen reaching his body tissue.
The boy’s mother crossed the border into Israel, and brought him to Western Galilee Medical Center in Nahariya with help from the Israel Defense Force’s Northern Command.
He was then moved to the pediatric heart institute and the intensive care unit after the surgery by Dr. George Frankel.
“I thank Schneider’s medical team for treating my son so devotedly and saving his life,” the mother said.
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