June 5, 2017
Six years after the eruption of the conflict in Syria, Jordan’s Al-Zaatari Refugee Camp has become the largest Syrian camp in the region, with 80,000 residents. Over half of the camp’s population is under 24 years old, with 19.9% of the population being under five years old.
Through our medical missions to Jordan, cardiologist Dr. Allyah Abbas became acquainted with one of the younger refugees, Abdulrahman. In July of 2016, Abdulrahman came to the cardiology clinic in Zaatari supported by SAMS with his father.
“Upon his arrival to the clinic, I diagnosed him with “Long QT Syndrome,”, specifically Jervell and Lange-Nielsen syndrome a rare congenital heart condition that can lead to potentially fatal cardiac arrhythmia (irregular heartbeat), resulting in the brain and body not getting enough oxygen. This can lead to fainting and tragically, Sudden Cardiac Death. This very rare genetic condition is also associated with hearing loss from birth.”
At just five years old, Abdulrahman was facing a severe heart condition with few available resources for treatment.
The devastating impact of this illness was also felt by Abdulrahman’s family.
“As a genetic condition, Long QT Syndrome had already affected a whole generation of his family. His two brothers had already died under the age of 7 from Sudden Cardiac Death in the camp. We were later also involved in the diagnosis of Abdulrahman’s 2-year-old cousin with the same condition,” Dr. Abbas said.
To treat this condition, Abdulrahman needed to undergo urgent cardiac surgery, most important of his complicated and challenging management plan was a procedure called “left cardiac sympathetic denervation,” consisting of cutting part of the nerves that supply the heart, reducing the risk of the dangerous arrhythmia and sudden death.
The SAMS team on the ground in Jordan knew that immediate treatment was necessary, and worked hard with partners from the USA and UK to form an appropriate treatment plan. The Grace Children’s Foundation (TGCF) and TGCF’s Children’s Resource Exchange Center (CREC) network played an instrumental role in connecting Abdulrahman to people ready to help him and used their network to bring Abdulrahman’s case to the Palestinian Children’a Relief Fund (PCRF). The PCRF then connected Abdulrahman to top tier medical expertise and funded the procedure.
Thanks to a collaborative process involving key partners from across borders, on May 4th, 2017, Abdulrahman underwent cardiac denervation surgery, staying in the hospital for one day before returning home to his family. We are grateful and delighted to report that the procedure went well. Our team on the ground remain in constant contact with him.
For all patients including refugees in Al-Zaatari and beyond, continuity of care is vital.
“Because this condition’s impact is felt across generations, I am still working on treatment plans for the family, including the 2-year-old cousin. Challenging and complex cases, like Abdulrahman’s, are difficult to treat when there is little supporting infrastructure but the generosity of SAMS supporters continues to make a real impact to those caught in the middle of the ongoing conflict,” said Dr. Abbas.
SAMS Medical Missions to Jordan bring highly skilled physician volunteers from around the world to treat Syrian refugees in Al-Zaatari as well as in Al-Azraq camps, and in urban areas. Medical missions are important, but not enough. More has to be done to ensure that vulnerable and displaced populations receive the care they deserve.
“I was lucky to catch Abdulrahman’s condition in time during our medical mission last year. With support from SAMS, clinicians and donors, I hope that we can create definitive management plans for children like Abdulrahman and his cousin,” she concludes.
SAMS is currently building a new facility in the Al-Zaatari camp, that will emphasize developmental support for children, including allowing for the monitoring of growth, development and nutritional status. To find out more about how you can support the new SAMS facility in Al-Zaatari, visit us here: bitly.com/zaatarisams
