Hamilton dad wants answers in daughter's post-transplant death

It's been a year to the day since 14-year-old Nicole Cassavetes died, and on Wednesday, her parents went to Queen's Park for answers.

Dale and Kim Cassavetes headed to Toronto to listen to MPP Paul Miller raise the issue of their daughter's medical treatment in the legislature. They also were able to meet with Ontario Minister of Health Deb Matthews for  about five minutes.

It's all part of a quest to learn the details of Nicole's death at Toronto's Hospital for Sick Children last year, a death they say has left their family broken and marred with questions. Nicole had a heart transplant on April 13 and died from an infection on April 24.

The family has a list of 29 concerns about her treatment, Dale Cassavetes said. And until someone answers them, he and his wife are unable to grieve.

"We haven't had any closure yet," he said. "I don't even think I personally have had a chance to mourn because I've been bitter about what happened, about how things have been handled.

"I've been focused on trying to get some kind of justice or accountability — or at least answers — and we're just hitting road blocks."

Nicole, who was a ninth grader at Saltfleet Secondary, had heart problems from birth. Her first heart surgery was when she was 11 days old.

When she learned of her need for a heart transplant, she became a vocal advocate of organ donation. She was a sweet, compassionate girl who would cry when others were bullied, Cassavetes said. Her transplant journey drew more than 1,300 followers on Facebook.

Heading into the surgery, "I remember the overwhelming fear she had, but also the incredible bravery she displayed," her father wrote on the Nicole's Heart Transplant Facebook page.

"It was Nicole who kept our family together that morning. After 15 hours of surgery, we thought it was a whole new beginning for our family."

Twenty-nine concerns

But it wasn't the beginning they imagined. Among Cassavetes's 29 concerns: the damage to her new heart that seemed to be there before it was implanted, to medical staff keeping her chest open for six days. He believes that encouraged the infection, and he said he hasn't gotten a satisfying answer as to why it was done.

He has questions about how long her new heart was stored before it went into her body.  Also on his list: the size of the heart that was transplanted, the age of the donor and the apparent administration of medication to which she had known allergies.

The family has gone to the pediatric death review committee, which found no fault. It has lodged a complaint with the College of Physicians and Surgeons against two of the physicians involved, and they are awaiting the results of its review. It has written letters to Ontario's chief coroner and the Sick Kids chief of staff.

"It's disheartening," he said. "We cannot get answers to specific questions."

Sick Kids hospital issued an email statement to CBC Hamilton.

"The hospital has previously met with the family," it reads. "The Coroner’s Office has also been involved in a review of this unfortunate death."

Concerns seem 'reasonable and legitimate'

Miller, MPP for Hamilton East-Stoney Creek, said he has some unanswered questions too.

"I am curious," he told CBC Hamilton. "Some of the concerns they listed seem reasonable and legitimate to me."

The family doesn't want another family to experience what they have, he said.

"I think that's a worthy cause. They don't seem to be vindictive in any way. They just want answers."

Cassavetes feels optimistic after the meeting with the minister, who said she would look into it, he said.

"I'm certainly not going to rest," he said. "I do want the answers. I think our family is deserving of all the answers. My daughter certainly is."