5-year-old refugee with cerebral palsy dies after routine surgery in Windsor, parents searching for answers

A Syrian refugee family that travelled for years through refugee camps in Lebanon and Turkey before arriving in Leamington, Ont. is searching for answers after their five-year-old son died following a routine procedure at Windsor Regional Hospital.

Windsor Regional Hospital says internal review complete but parents say they haven't seen recommendations

The Kufafi family's search for answers following their son's death 3:32

A Syrian refugee family that traveled for years through refugee camps in Lebanon and Turkey before arriving in Leamington, Ont. is searching for answers after their five-year-old son died following what they say was a routine procedure at Windsor Regional Hospital.

Yusuf Kufafi died the day after a procedure on Nov. 22, 2016 to change a gastrostomy tube he needed to eat food. The tube was "improperly located," allowing food to spill inside his abdomen and causing his death, according to a coroner's report sent to the family May 17, 2017.

The Kafafi family said Yusuf was full of life and always smiling. (Chris Ensing/CBC)

Windsor Regional Hospital completed an internal review requested by the coroner's office into Yusuf's death and told CBC News it has implemented all of the recommendations following the review. 

Yusuf's family, who primarily speak Arabic, said they have never seen those recommendations even though that review was completed shortly after the coroner's report was given to them.

Yusuf's mother has kept her son's clothes in a suitcase — taking them out each day to fold them and hold his favourite toy, a stuffed monkey, that he carried with him on their journey to Canada. 

"We suffered a lot to provide the medication for him," said Huwayda Hillo Kufafi through a translator, describing how the family would go from one hospital to another searching for the best care for their son. The family of 11 lived in tents in both Lebanon and Turkey. 

That's what we do when we lost somebody - when somebody dies... It was a huge surprise. He came and he was crying and I knew he died.- Gharam Kufaniis Kufafi, Yusuf's sister

His father Khaled Kufafi, also speaking through a translator, remembers holding his infant son in his hand under his jacket while in Lebanon to keep him warm.

"We were happy and excited to come here especially for my son because they told me that Canada has the best healthcare system," said Khaled, who drives a taxi covered in Canadian flags.

"I didn't know that this was going to happen."

Routine procedure gone wrong

Yusuf, who used a wheelchair, and his mother left his school in Leamington on Nov. 22, 2016 to travel to the Met campus of Windsor Regional Hospital to change his feeding tube.

"Even when we put him on the bus he was really, really excited and happy," said Huwayda Hillo, holding her youngest son on her lap inside a living room with walls covered with photos of Yusuf. 

Khaled Kufafi said he wants to know what is being done to make sure no other family goes through what they did. (Chris Ensing/CBC)

Following the procedure she begged the doctors to keep her son overnight because of the pain he was in. Instead he was sent home.

"During the night he was crying and he looked like he was in pain," she said. "In the morning his eyes were rolling back."

Gharam Kufaniis, who was 15 at the time, said she didn't know that her younger brother was going to the hospital but she vividly remembers what happened the next day. 

"I was getting ready to go to school and I heard my mom just yelling and screaming to my dad 'Come see your son,'" she said. 

Yusuf's mother Huwayda Hillo Kufafi said she begged the hospital to keep her son overnight. (Chris Ensing/CBC)

While her parents raced Yusuf to the hospital in Leamington, Gharam stayed home to look after her other brothers and sisters. 

"After one hour or something my dad called me and he said open the windows," she said, thinking it was to help Yusuf breathe when he came back home. 

That's when her father told her the news. 

"That's what we do when we lost somebody - when somebody dies. It was a huge surprise. He came and he was crying and I knew he died."

Coroner's report questions procedure

On Jan. 16, 2017 — two weeks after what would have been Yusuf's sixth birthday — the family requested reports from the coroner's office related to their son's death. 

That report lists "adverse event – operation/procedure related" as a factor in Yusuf's death. It also states that "according to the hospital chart there were no issues with the tube insertion" performed at the hospital.

The coroner's report into Yusuf's death said it was caused by an "adverse effect" of a procedure. (Chris Ensing/CBC)

"At postmortem examination, the distal end of the gastrostomy tube was found to be improperly located within the peritoneal cavity," wrote pathologist Dr. Edward Tweedie in the report.

The coroner's office asked for an internal review into the case. 

Review complete, recommendations unknown

The review into Yusuf's death was completed in June 2017, according to a spokesperson for Windsor Regional Hospital.

"We had everybody who took care of the patient and our administrative and physician teams review the case," said Monica Staley, regional vice president of Cancer Services, Renal, Patient Relations & Legal Affairs.

Staley said the review covers "what went well, perhaps what didn't go so well, and where there are opportunities and gaps in care."

The recommendations from those reviews are shared with the medical advisory committee, quality and care committee and the board of the hospital, said Staley. 

Gharam Kufaniis Kafif, Yusuf's sister, said she woke up to her mother screaming for help on the day her brother died. (Chris Ensing/CBC)

"Many times, most times within our hospital we deal directly with the patient and family," said Staley, who said the family is also entitled to the recommendations.

"So if the patient and family is here we have contacted them, we have a relationship with them. We will have a family meeting and discuss the recommendations with the patient and family — we do that all the time."

That wasn't done in this case. The Kufafi family said they did not meet with staff at Windsor Regional Hospital following the coroner's report. 

A book full of photos of Yusuf Kufafi sits on the family's living room table. (Chris Ensing/CBC)

Staley said the recommendations were shared within the coroner's office, whom they trusted to pass the information on to the family.

"We then went through the coroner because when the coroner has that relationship with the family and the patient in this case and asked us for our review after his report we went through the coroner," said Staley, adding if the family has not received those recommendations "we're more than open to speaking to them."

Yusuf's father Khaled told CBC News on Thursday that they have not received those recommendations. 

But he also said the family had been contacted by the hospital earlier that day, one day after CBC News raised the family's concerns with Staley. 

Khaled said through a translator that the conversation was a short one — since the family doesn't speak English.

Monica Staley, the regional vice president of Cancer Services, Renal, Patient Relations & Legal Affairs at Windsor Regional Hospital, said they are open to meeting with the family to answer any questions they still have about their son's death. (Chris Ensing/CBC)