HMC-SickKids partnership continues to raise hope

The success story of little Abdulla, a patient at HMC’s Al Maha Children’s Unit, demonstrates how the partnership has improved patient care, empowered families and encouraged them to make a difference in the lives of children living with complex medical conditions.

Abdulla was born in 2007 with Down’s Syndrome, complicated by congenital heart disease as well as severe respiratory problems, which made him extremely weak and made breathing and eating on his own impossible. He required a ventilator and tube feeding, had frequent chest infections and needed several surgeries to deal with the complications of his illness.

“Abdulla’s growth and development were greatly impeded by his health challenges, which required long stays in the ICU and eventually the high-dependency ward at Hamad General Hospital, where he stayed for two years,” said Dr Reem Babiker Mohamed, consultant at Al Maha Children’s Unit and vice-chairperson of HMC’s Paediatric Long-Term Care Working Group. “Despite his condition, Abdulla is a happy, playful child - we found it hard to believe he was ill at times. He’s a real fighter who does his best in spite of his difficulties.”

In 2010, Abdulla was moved to the then newly-established Al Maha Children’s Unit at Rumailah Hospital. Developed by HMC in partnership with SickKids and Holland Bloorview Kids Rehabilitation Hospital, the long-term care facility is designed to improve quality of life for technology-dependent children with medically complex conditions by providing not only acute medical care but also their educational, rehabilitation and developmental needs through a multidisciplinary team of specialists.

The move changed Abdulla’s and his family’s lives. “It was a pleasure to watch Abdulla begin to adapt to his condition and catch up with his developmental milestones. His parents and his brothers were very much involved in his care and very committed to training with our team to be able to care for him at home. The positive approach of his family to his care really made a difference to Abdulla and we felt positive that he was going to make it,” said Dr Mohamed.

“Children with complex medical issues need to be accepted as children and Al Maha provides them a home where they and their families can adapt to their complex issues. Unlike with a simple illness, it takes more time for the families to come to terms with their child’s condition, become familiar with the child’s needs and feel comfortable enough to take care of him or her on their own. We work with the families to empower them as we have seen how this improves the care and even how the family functions around the child,” Dr Mohamed explained.

Last year, Abdulla was finally brought home by his parents. His father Mahmoud spoke about how having their child at home has changed everyone in the family. “Previously, we were mere visitors at the hospital. At home with us, as soon as Abdulla opens his eyes he sees his mother, his father and his brothers. This is emotionally reassuring for him. He likes to play football, and being able to be active makes up for the four years when he could barely move,” the proud father said.

“Abdulla is now able to do his daily activities normally, playing and sleeping just like any child. He plays with his brothers at home and even with other children outside,” his mother added.

Abdulla’s healthcare team follows his condition through the Complex Care Clinic. His heart problem has finally resolved and he only needs to be on ventilator when he sleeps. The clinic works closely with Abdulla’s pulmonologist to monitor his breathing problems. “Our homecare services team has testified that the parents barely needed help due to their own skills and commitment towards Abdulla’s care,” said Dr Mohamed.

Abdulla’s family was honoured during the recent fourth anniversary celebration of the partnership between HMC and SickKids that continues to transform paediatric healthcare services in Qatar.