How far would you go for the best medical care for your child?
For five-year-old Wadeem and her family, the answer was half a world away.
Diagnosed with complex congenital heart disease at birth, Wadeem underwent multiple cardiac reparative surgeries in her home country of Saudi Arabia and, later, the United States, during her young life. As Wadeem grew, her condition continued to deteriorate and as a result, she was put on the heart transplant list. In June 2017, her family’s prayers were answered - a heart had been found.
Wadeem underwent the life-saving procedure at a hospital in New York City, where she remained for the next few weeks until her fragile condition stabilized. In July, she was transferred to Blythedale Children’s Hospital in to begin her recovery.
She was admitted for post-transplant cardiac rehabilitation and management of chronic lung disease that required round-the-clock mechanical respiratory ventilator and BiPAP (biphasic positive airway pressure) dependency, plus treatment of a compromised immune system.
“When she came she couldn’t walk, she was losing a lot of weight and not growing,” said Hani, Wadeem’s father. “It was a hard experience, but we got through it with the help of the best hospitals and rehabilitation facilities that gave her the best treatments to improve her health and get her laughing again.”
“She was playful, happy and loved to be around people; a normal girl that just went through a very serious surgery,” he said. “We had to be careful with her, but started her immediately on the full program of physical, occupational, respiratory, speech and feeding therapies.”
Wadeem’s physical strength emerged and the once frail little girl progressed from standing, to walking and running down the Hospital’s hallways.
“She wasn’t able to transition up off the floor when she first arrived, so we worked a lot on various skills to get her muscles activated and moving,” said Mark Felsenfeld, Wadeem’s physical therapist. “She is miles from where she started. For any kid to show tremendous gains like that… I’m thrilled.”
In November, a routine cardiac appointment and procedure prompted Wadeem’s brief discharge and subsequent readmission to Blythedale.
Her therapies resumed as normal and with it came another boost in Wadeem’s energy level and, in turn, the use of her voice.
“Over time, she was able to build her tolerance to using a Passy-Muir speaking valve and went from only saying, ‘Yeah’, to speaking some words, expressing some sign language and making more communicative gestures,” said Diane Trasatti, speech language pathologist at Blythedale. “She understands and plays a lot more now. She’s really one of a kind.”
Wadeem’s continued developmental progress was also evident in her newly conditioned ability to interact with her environment.
“In the beginning she had a tough time playing with toys, so we worked a lot on her hands and arms,” said Kelly Milano, occupational therapist. She added that the Hospital’s interdisciplinary approach also helped Wadeem greatly. “We worked together on a common goal of getting the most from and for her, so everyone wants to help in the best possible way.”
Help that is much needed as Wadeem and her family are more than 6,500 miles from home. Fortunately, her parents were able to secure local housing as their daughter received top caliber post-acute rehabilitation through Blythedale’s International Patient Program. Since 2012, dozens of children from Qatar, Kuwait, United Arab Emirates, Japan and Saudi Arabia have all been treated for various diagnoses, including heart/liver/multi-organ transplants, quadriplegia/hemiplegia, genetic abnormalities and disorders, cancer and scoliosis.
“Parents often leave everything behind to accompany their child to the United States for vital medical care, often not available on the same scale in their own country,” said Ana Oliveira, Blythedale’s Global Patient Coordinator. “Just as with all of our patients from the U.S., these kids have unique and specialized needs that we can accommodate, alongside parent training and comprehensive discharge planning.”
March 26 was a bittersweet day at Blythedale for staff and family as Wadeem was discharged for the next phase of her pulmonary care in Pennsylvania.
“We are grateful to her entire medical team for their support, care and excellent service,” said Hani, Wadeem’s dad. “From the little things to the big things, everything has been perfect.”