Billal, who is being treated at the HPPSCC, suffers from a familial neurodegenerative disease.
What goes through the mind of a young sibling when his brother or sister has a severe chronic or terminal disease?
Understanding the need to view each child and family member with a holistic eye, the newly launched Pediatric Palliative and Supportive Care Center (HPPSCC) at the Hadassah Medical Organization offers parents an avenue to find out.
Inviting parents to bring their healthy children to consultations, HPPSCC gives siblings a chance to share their feelings and perspectives; to have their voices heard.
Consider Iham, a ten-year-old boy whose brother, Mohammed, like three of his siblings, is afflicted with a severe neurodegenerative disease. Iham witnessed the passing away of a brother and sister from this disease, and was now observing the deterioration of Mohammed and the youngest sister. The staff of the HPPSCC suggested to the parents that it would be important to include Iham at one of the family meetings. It was there that the parents learned Iham was distraught because he wanted his terminally ill brother to come home from the hospital. Although Iham had not expressed himself previously, it was clear that his brother’s condition and the decisions his parents were making were having a significant impact upon him. The parents came to the realization that Iham had an important role in Mohammed’s care. As a result, the parents and staff modified Mohammed’s advanced care plan to address Iham’s wish to have quality time at home with his brother.
Another family coming to the HPPSCC has a set of twins. The twin sister is healthy, but the baby twin boy contracted meningitis during the early weeks of his life. As a result, he suffers from severe psychomotor retardation. The parents decided to place him in an institution that would provide for all his needs. The well-meaning parents, in their attempt to protect an older brother, did not explain why the younger brother had suddenly disappeared. With the help of Center staff, the parents came to understand why the older brother, who was only four, was always angry with his younger sister–that the anger was a reflection of his confusion and that he blamed her for his brother’s disappearance from his life.
The HPPSCC facilitated a meeting between the two brothers. As a result of this first reunion, the family came to the realization that it was better for the older brother to have more contact with his sibling. The parents now bring the younger brother home frequently and the brothers have developed a strong bond.
The HPPSCC was launched on January 1, 2017. To date, 30 appreciative families have been assisted by HPPSCC, with more waiting in the wings for help. As Dr. Brooks relates: “The Center is growing beyond our expectations. What is amazing is that there is such a great need for the HPPSCC and it is difficult for us to keep up with the demand.”
Even in the initial consultation with parents, the staff address both the child’s medical needs and the entire family’s emotional challenges. As Prof. Wexler, Co-director of the HPPSCC explains: “During our first meeting with the parents, they tell us all about the child’s extensive medical history. Then we ask them to tell us about their child. What does a good day look like for him? What does he enjoy doing? Immediately, the expressions on the parents’ faces change, as they begin to reveal the soul of their child. The parents realize that the staff of the HPPSCC views their child not as a medical problem, but as a human being with challenges.”
Sometimes, the Center is the only place parents have to go for emotional support when they are losing a child. Dr. Brooks relates the story of Achmed from Gaza, who has a rare genetic illness, which is almost always fatal. Achmed was brought to Hadassah with the hope that a bone marrow transplant might save him. When it became clear that he was not a candidate for this treatment, he was referred to the HPPSCC, where the staff helped the parents to understand that the focus now needed to be on making Achmed as comfortable as possible and maximizing the quality of his life. The family faced many challenges, especially because it was difficult to provide Achmed with all the care he needed in war-torn Gaza. HPPSCC was able to set up a care plan that allowed Achmed to return home. Despite Achmed being in Gaza, Dr. Brooks comments that “we receive messages and pictures of Achmed almost on a daily basis, and we have managed to send medical supplies to the family.”
While many of the children followed by the HPPSCC pass away, sometimes, there are happier endings–as with Moshe. At one month of age, Moshe had a severe feeding problem and suffered from “failure to thrive” syndrome. The cause was unknown, as is the case for many of the children that are followed at the Center. Based on a multidisciplinary approach developed by members of the HPPSCC staff, Moshe, now 18 months old, is thriving. He still faces many challenges, but progress is being made on all fronts.
Because of the close relationship between parents and staff and the approachability of team members, often a phone consultation may help the parents understand that they don’t need to come to the hospital immediately. This often translates into fewer hospitalizations for the child.
While HPPSCC staff offer their expertise and advice, the philosophy at HPPSCC is that parents know their children best. “Usually, they are spot on,” says Dr. Brooks and we place the parents at the center of the decision-making process. “That’s one of the reasons parents are happy and grateful to the Center.”
It is the vision of the Center to have a program for siblings, which is currently being developed. HPPSCC staff are preparing culturally appropriate, multilingual audiovisual and written material for families– including siblings. Dr. Brooks also has her sights on a website just for siblings, as well as a designated room for parents and siblings to just come and “chill out.”
Looking a little further ahead, Dr. Brooks has a wish list, which includes home visits to patients and working in collaboration with home physicians and home hospice programs. The goal is to be there for the family in times of need and to provide them with the coping tools to navigate the challenging terrain of serious illness.