Erykah’s Story: Regaining Mobility After Brain Hemorrhage and Cardiac Arrest
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Erykah was a healthy 10-year-old girl when she suffered a devastating occurrence in September of 2020: A malformed tangle of blood vessels in her brain burst and caused a brain hemorrhage. Erykah went into cardiac arrest. She lost the ability to walk or talk and was completely dependent on her caregivers. With occupational therapy and physical therapy at Children's Hospital of Philadelphia (CHOP), she has made great progress and has regained a measure of mobility.
Erykah with her dad, Eric, and physical therapist Jennifer Penston.
After the cardiac arrest, Erykah had multiple hospitalizations at CHOP over the next 18 months. She needed medical intervention to breathe and eat. “We thought she wasn’t ever going to do anything again,” says her father, Eric. “We became nurses,” he says of himself and his wife, Marilyn.
In spring 2022, Erykah began occupational therapy and physical therapy at the CHOP Care Network Specialty Care Center, Princeton at Plainsboro, to begin the challenging task of regaining some independence. Erykah’s occupational therapist, Bobbi Ciocco, MS, OTR/L, and her physical therapists, Anjali Toole, PT, DPT, and Jennifer Penston, MS, PT, PCS, c/NDT, diligently worked together with Erykah, her parents and her nurses.
“When I met her, she couldn’t even change her position in bed or sit by herself,” says Penston. “One of our first priorities was to get her equipment, like a proper wheelchair and braces for legs. There was no way for her to stand without getting braces.”
First core strength, then everyday tasks
The team worked on Erykah’s functional mobility. Physical therapy helped her regain core and lower body strength and breath control. “Every day there was improvement,” says Penston. “At first at the parallel bars we just wanted to see how long she could stand. Now, with some help, using a walker she can walk across a room!”
Occupational therapy helped Erykah regain some use of her arms and switched her hand dominance for daily tasks. She was initially right-handed and now needs to use her left hand for writing and skilled fine motor activities. Occupational therapy created night splits to stretch her right-hand fingers to relieve tightness. Erykah also worked on loosening her shoulder muscles, and she can now reach overhead to put on a shirt and reach down to pull on pants. The occupational therapist worked with the family to get the appropriate medical equipment in their home to make care and handling of Erykah more manageable.
In addition, Erykah is working on vocalizing words during sessions with a speech therapist, but currently she communicates primarily by using an iPad.
Often, around two years after a major illness, a patient stops making any more significant progress, but Erykah’s team thinks she will continue to show improvement. “She is currently working on standing more symmetrically and walking with less help,” explains Penston.
“We are getting her into a school for kids with medical needs,” Eric says optimistically. “She’s come a long way.”