Guillain-Barré Syndrome: Yousuf's Story

YousufFatma had just returned home to Doha, Qatar, after a business trip when her 3-year-old son, Yousuf, suddenly fell gravely ill. His eyelids were drooping. His speech was slurred. He was having trouble breathing. Within 24 hours, he was completely paralyzed.

“In the afternoon he was able to walk, and in the evening he was not able to walk at all,” says Fatma. “He could not even open his eyes.”

Doctors at a hospital in Doha diagnosed Yousuf with Guillain-Barré syndrome, an extremely rare disorder in which the immune system attacks the nerves. Yousuf was placed on a ventilator, and he received antibiotics, IV fluids and several doses of IV immunoglobulin, the first line of treatment for Guillain-Barré. Yousuf’s doctors and his parents knew he would need the most advanced care available — and they knew he could get it at The Children’s Hospital of Philadelphia.

“We chose CHOP because of its reputation — and because all of the logistics were handled really smoothly,” says Yousuf’s father, Bader. The family also received assistance from CHOP’s multilingual International Patient Services (IPS) team, which works with families, referring physicians and embassies to coordinate care for patients who travel to CHOP from other countries. In addition to the services provided by IPS, CHOP offers medical interpretation services for families through its Language Services Department.

Cathy Timko, MSN, CRNP, a clinical nurse coordinator on the IPS team, worked with the embassy of Qatar to arrange for Yousuf to be transferred to CHOP via air ambulance, and worked closely with his family upon their arrival in Philadelphia in March 2013. Yousuf was admitted to CHOP’s Pediatric Intensive Care Unit (PICU), where he was cared for by a multidisciplinary team of specialists, including neurologist Daniel Licht, MD, who quickly realized that his young patient was suffering from a very severe form of Guillain-Barré called acute motor axonal neuropathy. “He was as sick as you can get, with every muscle in his body paralyzed by the inflammatory disease,” says Dr. Licht. Even with the most state-of-the-art treatment, a full recovery was far from guaranteed.

During his stay in the PICU, Yousuf received supportive care to keep him comfortable, as well as plasmapheresis, a treatment that removes harmful antibodies from the blood. Slowly, he began to improve.

After nearly three months in the PICU, Yousuf was moved to an inpatient rehabilitation unit, where he had regular sessions with CHOP’s occupational and physical therapists. With their help, he learned to walk again and regained his fine motor skills. “They did a great job,” says his mom. “We are very grateful to them. They really knew what they were doing.”

In August 2013, Yousuf was discharged from CHOP. For the next several months, he stayed with his family in an apartment near the Hospital and returned to CHOP twice a week for physical and occupational therapy.

A year after he arrived in Philadelphia, having made a near-total recovery, Yousuf returned home to Qatar, where he will continue to receive care. He has his life back — and he has something else, too: memories of the time he spent with the Hospital’s art therapists and child life specialists, of the hours he spent in the Hospital’s playrooms, and of the day he picked cucumbers in the Hospital’s rooftop garden.

“There are so many wonderful activities at CHOP,” says Fatma. “It’s been a wonderful experience.”
 

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