In the small living room attached to a simple kitchen, Waleed lies in his fully adjustable hospital bed. The nine-year-old boy has not been able to move or walk since the age of four, and now he is hooked up to a ventilator that restricts any attempts at movement. He wears a short-sleeved red T-shirt despite the February chill, and a fan sits at his bedside, ready to be turned on at his command.
Waleed returned to his home in the village of Za'tara, east of Bethlehem, last April after spending seven months in the intensive care unit at CBH. Prior to that, he was regularly admitted to CBH. This is normal in his case, as he suffers from Spondylometaphyseal Dysplasia, a bone disease characterized by limited postnatal growth; rhizomelic shortening of the limbs in early childhood that progresses to shortening of the trunk.
Waleed became ventilator-dependent in the fall of 2022. According to Dr. Haytham Eriqat, one of the complications of Waleed's syndrome is subglottic stenosis. This is a narrowing of the cricoid, the only complete ring of cartilage in the airway. In this case, placing the child on a ventilator was the final solution to save his life.
Despite the excellent care provided by the CBH staff, Siham, the 35-year-old mother, felt very uncomfortable staying in the hospital while her other five sons were at home with their father. She was thrilled to learn that Waleed can be cared for at home if he is provided with a ventilator. Siham has shown great interest and enthusiasm in learning about nursing and rehabilitation while at CBH so that she will be ready to care for Waleed when he returns home. After all, she is a bright and well-educated woman with a bachelor's degree in mathematics and physics.
With the support of the social services team, the family was able to raise funds for the machine from the local community and the mother and child were able to return home in April 2023. Every few weeks, the CBH team, consisting of a doctor, nurse, social worker, and physical therapist, would visit Waleed to check on him. The medical reports showed that Waleed was in a very stable condition and most importantly, the mother and child were more relaxed to be home.
After the war stroke on October 7, the CBH team was unable to reach Waleed due to the checkpoints and restrictions on movement in the West Bank. During this time, Siham contacted pediatric pulmonologist Dr. Ra'fat Allawi whenever she had questions about Waleed's health.
On February 7, after two failed attempts, the CBH team was able to visit Waleed at home. The whole family was there to greet the home care team, including Siham and Mohammed, the forty-year-old father who has been out of construction work since the war broke out. The family's children and cousins were also at home, as there was no regular school after the war. Some kids were around Waleed, others were outside enjoying the winter sun or checking on the family's farm animals.
Waleed could not hide his smile when he saw the CBH team. He knows every one of them. There is Dr. Haytham, who once spent an entire night saving his life when he was having trouble breathing. There was also Bishara, the physiotherapist, with whom Waleed used to tease and argue. We now know that the boy does not enjoy rehabilitation sessions, and with his humorous yet strong character, we were not able to convince him to have one.
