Four-year-old Rachel is excited to go to the first day of preschool. The lively, talkative, big-eyed child is running around showing everyone her new pink backpack and her lunch-box.
Different from her classmates, however, Rachel will also be bringing her ventilator to school, connected to her via a long tube and her feeding pump. For Rachel’s parents, however, the day is the culmination of a yearlong journey facing fear, many nights in the pediatric intensive care department, and many months in rehabilitation.
A little after turning three, Rachel turned clumsy, falling often unexpectedly. Then came the vomiting. An MRI scan showed a large tumor in her brain.
Brain tumors are a known childhood malignancy, and most often are curable. Rachel underwent surgery with high hopes of recovery. Then came a series of unexpected and rare complications, which required more surgeries, and left her unable to move or speak. Her survival was a “medical miracle” – the term behind which stand a long line of specialists, who fought for her life. On transfer to ALYN Hospital, she was hooked up to a respirator, unable to lift her blond head from the bed, mute and withdrawn.
Helping Rachel go from the small heap of helpless limbs on her bed to the one running around singing took all the experience and effort of pediatric rehabilitation.
The rehabilitation of children is fundamentally different from that of adults. Rehabilitation aims to help the patient regain the functions they lost, and allow them to regain the abilities they had at the time of insult.
But for children, rehabilitation is even more challenging. A child constantly develops. Every month is critical for the development of the brain, learning new skills, achieving new tasks. On top of getting back to where they were, rehabilitation has to help the child continue to attain new goals, to keep growing and developing, and to minimize the gap between them and their peers.
At three years of age, Rachel was ready to transition from being a toddler to a young child. Between three and four, she should have been improving her motor skills (going up and down stairs, catching a ball, hopping), her fine motor abilities (drawing circles and squares, copying letters) and communication (using three word sentences and telling stories), as well as her social competence (cooperating with peers, playing fantasy games).
Rachel had to re-learn how to be a girl
For a whole year, Rachel and her family learned many new terms. She re-learned how to walk and talk, and started eating and drawing. Her parents learned how to operate a respirator, a bulky laptop-sized machine that will go with Rachel everywhere until she can safely breathe by herself.
Children need to be motivated, so exercises have to be planned to be fun and meaningful activities for a three-year-old to cooperate. Rachel especially loved the hospital school, where the dedicated educators create an age-appropriate social and pedagogical atmosphere where the children thrive.
“We’ve seen so many children admitted to rehabilitation after devastating injuries or diseases,” says Dr. Eliezer Be’eri, head of the Respiratory Rehabilitation Wing at ALYN. “It’s always very gratifying to send them home – where they belong.”
It took a whole year for Rachel, still going back and forth for medical procedures, to again find what her mother calls “her Rachelness.” She still has a lot of challenges to face. But for Rachel, all this pales and the only salient issue right now is choosing the sneakers for her first day in preschool.
The writer is director-general of ALYN Hospital.