Parents Fight Canadian Hospital for Child's Survival


Personal Stories of Decision and Fate

Tina Jones has had first-hand experience with such an excruciating decision.

Doctors told Jones that her daughter, Kassandra, would likely die soon after birth. But Baby Kassie, born in 2000, beat the doctors' predictions and survived. Despite being born with cytomegalovirus, a virus that can cause life-threatening disease in people with weakened immune systems, she has survived for more than a decade.

After coming down with several respiratory illnesses, Baby Kassie went into respiratory failure. Doctors didn't believe she would survive the infections, but Jones and her family requested that surgeons perform a tracheotomy.

"We've always looked at quality of life instead of quantity and we never wanted to go for a tracheotomy or ventilator," said Jones from Tremble County, Ohio. "But then we looked at the big picture after talking to our doctors and knew that the tracheotomy would take away a lot of her suffering."

Kassandra is now 11 years old and lives comfortably at home, her mother said.

While Jones and Kassie's doctors talked at length about options, the physicians never disagreed with the ultimate decision to keep Kassie on life support.

"I don't think such a decision should be anyone's but the parents," Jones said. "This has given us more time with Kassie. We don't know when she'll pass, but even if it's just a few more months, we're going to enjoy these few more months."

Misty McMahan, a mother who also had to make a difficult decision about her baby's life, also said end-of-life care should ultimately be up to the family. But unlike Jones, McMahan made an equally harrowing decision of fate for her child.

After McMahan's son Nathaniel was born with Menkes syndrome, a genetic defect that makes it difficult for the brain and other parts of the body to get enough copper, doctors offered surgery after surgery and treatment after treatment.

Baby Nathaniel suffered from seizures, stroke, ear infections and scoliosis during his short life. He continued to come down with respiratory problems and doctors offered to perform a tracheotomy due to his severe breathing problems.

But, after much discussion with her husband and family, the family declined the tracheotomy and any further surgeries.

"We knew the diagnosis was poor and we didn't know how long we'd have with him," McMahan said. "But we did know that we didn't want Nathaniel to die, and say, 'We didn't make the right decision.'"

Two days after the McMahans declined, doctors told the family that Nathaniel's system was shutting down.

"We're glad we made that decision so he was comfortable," she said. "The family got to see him on his last days, and he decided to take his last breath in front of all of us. It was the most peaceful thing we'd ever seen."

Proceeding With Ethics

Dr. Sarah Friebert, a pediatrician who specializes in pediatric palliative care in Akron Children's Hospital in Ohio, supported both Jones and McMahan with their babies' end-of-life decisions. Friebert was not up-to-date on the details of Baby Joseph's case, but she said she has seen this sort of conflict before.

"Doctors must do diligence to make sure they are exhausting as many possible avenues to get to that middle point," Friebert said. "They know that the parents are going to have to live with those consequences for a long time. "

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