An eight-year-old boy with a rare childhood disease has been refused care by at least one Canadian specialist because his mother took him to the U.S. for a treatment not approved in B.C.
"When it’s your child, you feel outraged," said mother Sima Hadidi, of Surrey, B.C. "He needs to be monitored. And you just cannot punish people because they didn’t do what you suggested."
Johnan Hadidi has Legg Calvé Perthes syndrome, a disease that cuts off the blood supply to children’s leg joints at the hip, causing bone degeneration.
Children eventually outgrow the condition, but they need treatment in the interim, to relieve pressure on the deteriorating joint and prevent permanent disfigurement.
"This is an evolving disease in the life of a growing child. As long as his growth hormones are active and he is growing, that bone is changing," said his mother.
Disagreement over treatment
Orthopedic surgeons at B.C. Children’s Hospital wanted Johnan to have conventional surgery called osteotomy, which involves cutting and reshaping his leg bone. It would have put him in a body cast for several weeks.
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"I would not have had my child go through osteotomy," said Hadidi.
Instead, his mother, who has medical research training, decided to take him to Baltimore last year, for a less invasive but experimental procedure, normally done only on children older than 12.
"I read all about this disease and I knew things that he would offer so I prepared myself," said Hadidi. "I picked — to my own opinion — the least invasive option."
Hadidi paid $40,000 in Baltimore for pediatric orthopedic surgeon Shawn Standard to do a procedure called core decompression with stem cell implantation, which is not approved in B.C. for any child with the disease.
"I spoke to her strongly that this was experimental and that I would not recommend it," B.C. Children’s Hospital orthopedic surgeon Dr. Christine Alvarez wrote in Johnan’s medical records.
"There was nobody here who would recommend it, and certainly would not offer it in this situation."
Alvarez also made it clear she would not see the child for follow-up, afterward.
Mom labelled 'difficult'
"Mom has been very difficult to manage," Alvarez wrote. "If they do go down to Baltimore for the experimental method that I have described above, I will no longer follow the patient."
"I never thought they would want to manage me," said Hadidi. "Because my kid is sick?"
Hadidi said Johnan’s condition has improved significantly since he had the procedure in the U.S. However, in the year and a half since, she hasn’t been able to get him an appointment to see a B.C. orthopedic specialist for follow-up, despite referrals by the family doctor to two other surgeons.
"I have been thinking about moving someplace closer to Baltimore," said Hadidi. "It makes me feel desperate. It pushes me to do what I have to do at this point."
One of the referrals was to Dr. Chris Reilly, who heads the department Alvarez works in, but he has never seen Johnan. Hadidi said the family doctor told her Reilly’s office failed to respond. As a result, Hadidi feels as if her son has been "blacklisted."
"Because you chose to go somewhere else because you seek other treatments — now we are punishing you and your child," said Hadidi.
Rules for denying care
B.C.’s College of Physicians and Surgeons said doctors should never refuse to treat a patient unless they see them at least once.
"It needs to make sense ethically and professionally that there is a good reason to refuse care. Otherwise we would expect physicians to assume care when appropriate," said registrar Dr. Heidi Oetter.
If they do turn a patient away, Oetter said, the reason must be justifiable.
"You can refuse for legitimate reasons but it can’t be just a discriminatory nature, which could include that they got care somewhere else. It really needs to make sense."
Dr. Alvarez and Dr. Reilly did not respond to Go Public about this, however. The head of pediatric surgery at B.C. Children’s Hospital spoke on their behalf, and said something went wrong there.
"We strive to provide the very best care for every child in B.C.," said Dr. Erik Skarsgard.
"When we don’t do that, we want to know why that is and we want to take whatever steps are necessary to rectify that problem, so it doesn’t happen to another family."
Problem being fixed
Skarsgard said that from now on Johnan will be seen regularly by one of the specialists in the clinic.
"We are committed to providing ongoing care for this child and any child, regardless of where they had treatment, if they have a condition that requires ongoing care," he said.
He indicated the hospital is still trying to determine exactly what went wrong in this case, but said they can’t find the referral to Reilly from Johnan’s family doctor, which records indicate was sent there in September 2011.
"What appears to have happened in this case is that there was no realization that a request for ongoing care had been received."
Hadidi said she still believes her son was discriminated against, but said all that really matters is he will now get the care he needs.
"All I see is a sick kid that needs to be monitored," said Hadidi.