Holt-Oram Syndrome: Abdulrahman’s Story

When Abdulrahman Abanemi first arrived in Philadelphia from Saudi Arabia, he was 5 years old and weighed just 10 kilograms.

Today, Abdulrahman is a happy, fun-loving 9-year-old who’s overcome many challenges, and his family gives much of the credit to the experts who cared for him at The Children’s Hospital of Philadelphia.

An international journey

AbdulrahmanAbdulrahman has Holt-Oram syndrome, an extremely rare genetic disorder that causes heart and limb abnormalities. When he experienced complications after having heart surgery in Saudi Arabia, his parents worked with their embassy and with CHOP’s International Patient Services (IPS) team to bring Abdulrahman to CHOP. 

Once Abdulrahman was under the care of CHOP’s experts, his health began to improve. “The plan they gave us for feeding and nutrition was really excellent, and helped Abdulrahman gain weight and grow,” says his father, Abdullah. After several months, Abdulrahman was well enough to return home, but his condition soon deteriorated. In December 2013, the Abanemis returned to Philadelphia.

Coordinated care from a comprehensive team

Like so many international patients at CHOP, Abdulrahman has very complex medical needs. He sees clinicians from General Pediatrics; Pulmonary Medicine; Cardiology; Gastroenterology, Hepatology and Nutrition; Infectious Diseases; Physical Therapy; and other departments across CHOP. He’s had airway and GI surgery, as well as multiple echocardiograms, endoscopies and cardiac catheterizations. He’s also been hospitalized many times, and has received nursing care in the apartment where he lives with his family.

It’s a stressful and difficult time for Abdulrahman and his parents, but they have an extraordinary group of people to help them. IPS Medical Director Trude Haecker, MD, works with International Clinical Care Coordinator Anna Simon, MSN, CPNP, to oversee all of Abdulrahman’s care, and is part of the team that cares for him when he’s hospitalized. When Abdulrahman’s family meets with his medical team, Dr. Haecker is there, too, to answer questions, make suggestions and provide support.

The Abanemis are also grateful for the help they have received from International Access Coordinator Lara Sader, who helps to coordinate Abdulrahman’s many medical appointments, and Patient Care Navigator Fakhereldeen Mohammed, who has been an important resource for the family during their stay.

“From answering questions about appointments to assisting with arranging home care, I have worked closely with the Abanemis to make their stay in Philadelphia as smooth as possible,” says Mrs. Sader. Mr. Mohammed adds, “I have been able to get to know the family and help them navigate the care experience at CHOP. It has been a privilege to partner with the Abanemis and the medical team to ensure that Abdulrahman receives the best care.”

“Everyone is really, really patient. When I need something, they are right there. I really appreciate that,” says Abdullah.

Getting stronger every day

With the help of his clinicians and the IPS team, Abdulrahman has made incredible progress over the past few months: He has continued to gain weight, and he no longer needs supplemental oxygen or a tracheostomy. And while Abdulrahman still has many challenges ahead, the Abanemis know that the CHOP team will continue to support them and will be involved in their son’s care for many years to come.

“I can see daily improvements in Abdulrahman,” Abdullah says. “I really appreciate the work they’ve done in this Hospital. I cannot ask for more. If anyone is looking for care for their children, this is the place to be.”

Contact Us

Reach a Global Care Coordinator at:

001-267-426-6298