Hamda was born at just 28 weeks of gestation and spent the first four months of her life in a Neonatal Intensive Care Unit in her home country of the United Arab Emirates. In the context of extreme prematurity, Hamda developed spastic hemiplegia, or permanent disruption in her ability to control movement of her right arm and hand.
For the next 16 years, Hamda lived with the limitations of spastic hemiplegia and other problems resulting from her prematurity, including poor eyesight and weakness in her right leg. She was unable to use her right arm for everyday things like eating and brushing her hair. Any activity that required two hands was very difficult, and Hamda relied on her family to help her get through each day.
Her parents sought help at hospitals close to home over the years, but no doctor was able to offer Hamda a good option, and few had experience caring for young people with her conditions.
Finding help in Philadelphia
Working with their embassy, Hamda and her family learned that there were specialists at Children’s Hospital of Philadelphia (CHOP) who could help. With the help of CHOP’s International Patient Services, the family made their first trip to Philadelphia in 2014, initially seeking treatment related to Hamda’s eyesight and weakness in her leg. It was the start of a relationship with CHOP that would continue for many years.
In 2016, 19-year-old Hamda was evaluated by Apurva Shah, MD, a hand and upper limb surgeon with expertise in pediatric conditions. He proposed a surgery that would help her to regain use of her right arm. On January 5, 2017, Dr. Shah performed a right arm tendon transfer. In this operation, the pronator teres tendon, which is the tendon that allows the hand to turn from palm up to palm down, is detached from the radius. It’s then wrapped around the radius in the opposite direction and reattached.
“Re-routing the tendon converts the pronator teres into a muscle that can turn the palm so it is facing up,” says Dr. Shah. “This type of operation is not often performed, in part because children with spastic hemiplegia have complex movement disorders which can make it difficult or impossible to determine what type of operation will reliably improve function.”
Surgery was just the first step, but with hard work, Hamda’s function improved immensely. With her arm in a cast, she began intensive occupational therapy, working twice weekly with Sandy Schmieg, OT, and Kristin Cunningham, OT — occupational therapists who specialize in helping children learn or relearn how to use their hands and arms following surgical reconstruction.
A new way of life
Within weeks following surgery, Hamda was able to turn her palm to face up. After a few months, she had regained a substantial amount of function in her right arm. For the first time in her life, Hamda was able to lift her right hand to her mouth to feed herself. This is especially important to her, because in her culture it is more respectful to eat with your right hand.
“I've started to be able to twist my hand,” says Hamda. “And I've started to be able to use my hand in writing, to eat, and to get hold of small things and move them using my hand. I’m now able to wash dishes which I could not do. I’m able to wash clothes, put them in the dryer and get them out again. Now I can use both hands when I get dressed.”
“It’s been incredible to see how Hamda has improved since tendon transfer,” says Dr. Shah. “We’ve been able to improve her quality of life in a way she and her family never thought would be possible. I am proud of everything she has accomplished.”
Hamda is fully recovered from her tendon transfer, but won’t return home until July, as some of her other care here is still ongoing.
“I would like to thank Dr. Shah,” she says. “Doctors in my home country weren't able to make the diagnosis that Dr. Shah was able to reach. They couldn’t do a quarter of what he has done. I am really proud of him.”