International Collaboration Saves Palestinian Girl

A 17-year-old girl from Nablus was diagnosed and treated through an international collaboration that involved Rambam Health Care Campus, the Palestinian Authority (PA), and the United States National Institutes of Health (NIH).

​  ​Jummana’s surgical procedure at Rambam.
Photo Credit: Pioter Fliter.
A new model of treatment, called “Bring the Patient, Bring the Surgeon” has assured Jummana’s ongoing care as well as successful treatment of others suffering from her rare condition.​

On January 25, 2016, Jummana successfully underwent a much needed surgery, made complex by her age and the specialized follow-up care required. Jummana had been suffering from a serious endocrine problem. Her physicians in the PA initially referred her to Rambam. She arrived at Rambam wheelchair-bound because of extreme bone pain due to severe hypophosphatemia (extremely low phosphate levels). The cause of her condition left her physicians puzzled. After examining her, endocrinologist, Professor Dov Tiosano, Director of Pediatric Endocrinology in the Ruth Rappaport Children’s Hospital, understood that they were dealing with another hormone FGF23, which is secreted from the bones.”

Doctors have only become aware of FGF23 in the past decade. Usually over-secretion of FGF23 is related to a genetic disease—not unlikely since Jummana’s parents were first cousins. However, testing revealed no genetic problems. Professor Tiosano explained there was only one other possible cause: a tumor. Convinced that a tumor had to be there, he contacted a colleague in the NIH. The diagnosis was finally made: a rare tumor only one half a centimeter in size, in her palette, was consuming massive amounts of calcium and phosphorous from Jummana’s bones. Rare in adults, such a tumor in a teen was virtually unheard of.
Diagnosis made, the NIH turned to Professor John A. van Aalst, Director of the Division of Plastic Surgery in Cincinnati Children’s Hospital for advice regarding the best qualified hospital to perform the surgery, made complicated by the patient’s age and the need for complex endocrinologic follow-up. In Professor van Aalst’s opinion, while there were only four possibilities, Rambam was the clear choice when he realized that Jummana’s endocrine exams had already been performed at Rambam. In addition, he had particularly strong connections with the Deputy Director of Rambam’s Department of Oral and Maxillofacial Surgery, Dr. Omri Emodi, and a strong connection with the physicians and surgeons in Nablus. Professor van Aalst shares, “Why did we choose Rambam? 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.”
Jummana’s doctors in the PA were contacted. They in turn made a referral to Rambam via the PA Ministry of Health. While bureaucracy was being handled, Dr. Emodi set up the multidisciplinary team needed for Jummana’s surgery, which included the patient’s endocrinologist, a hematoncologist, and the preplanning to create the necessary prosthodontics—a lot of preparation for a fairly routine surgery that would only take 1.5 hours. This included bringing her doctors from Nablus to Rambam to observe the procedure and learn more about her condition. This way they could better follow-up with her in Nablus, and just as important, gain valuable knowledge for treating similar problems if diagnosed in the PA.
Professor 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.”
Dr. van Aalst shared with passion, that none of this would have happened if it were not for the story within the story. Professor van Aaalst’s mother was born in Tulkarem, near Netanya, Israel. With family throughout the PA and West Bank, he is deeply connected to his family and friends in there. He also wants to contribute to the advancement of medicine there.
For the last 10 years Professor van Aalst has been working together with two surgeons from the West Bank—the two who happened to be Jummana’s doctors. In addition, Professor van Aalst was friends with Dr. Emodi. Professor van Aalst explained, “Every 6 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.”
These connections helped make the whole process go smoothly to the benefit of Jummana “When we made the decision that Jummana was going to come to Rambam, we invited her Nablus physician to create the medical report; he became the driving force to get her here.” Professor van Aalst explained that 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 Jummana.
Dr. Emodi and Professor van Aaalst are strong proponents of this new model of medical care. Rather than bringing only the patient from the West Bank or Gaza, the patient’s surgeon and physician is brought as well. The team of doctors all nodded their heads in agreement as Professor van Aalst concluded, “also bringing the surgeon and physician helps with self-sufficiency in the ongoing care of the patient as well as in caring for patients with similar problems in the future. We call this model, bring the patient—bring the surgeon.”
Explaining the complexity of Jummana’s follow-up, Professor Tiosano said, “Now that the tumor has been removed, we hope to be able to restore the calcium and the phosphate to her bones. Given that her bone density is extremely low (minus 8 Z-score), building her bones up again is the real challenge. This will be a long journey, but we are on track.” He also explained the importance of her ongoing care for medicine in general: “There is a huge interest in Jummana’s recovery. Because of the rarity of the case, one of the NIH Rehabilitation experts will also be visiting during follow-up to see how she is doing and to learn how our intervention is helping her to return to normal bone density and function.”
Jummana will soon be released home to Nablus. She still must undergo follow-up at Rambam for her ongoing condition, but her hope for the future is much brighter due to the collaboration and good will of doctors who live and breathe their Hippocratic oath.