Peter Kellett and Trisomy 18: Part Two

In last week's column, I mentioned that in 2005 Mary Kellett had given birth to a baby boy with Trisomy 18, a genetic disorder in which her son had a third copy of material from chromosome 18.

Though half of Trisomy 18 children die the first week, Kellett's son Peter didn't. Peter was a happy child and easy to raise, and was loved by everyone, she said.

But in 2011, he died at age 6 in a hospital after a routine appendix operation. A controversy began when a doctor claimed Peter had died of heart troubles caused by an infection, but an independent autopsy later revealed Peter had bled to death.

It was then Kellett learned many hospitals have futility of care policies. She said, "A futility of care policy means that if (the hospital doctor) believes in his opinion care is futile (i.e., won't result in improvement), he doesn't have to offer care or treat the child. We then learned the hospital he died in had a futility of care policy, but hadn't publicly shared it. We have wondered if Peter was a victim of this policy."

During the last legislative session in her state, Minnesota, the director of the hospital where she had sent her son testified its futility policy had not been made public because of not wanting to worry parents. Kellett believed the hospital may have withheld treatment after discovering Peter bleeding.

She said, "All throughout Peter's life, from the beginning, the only help it seemed we got (from the medical profession) was to help him die. There was a huge difference between the way doctors treated Peter and the way they treated our other kids. It was like they couldn't see the value of his life. The doctor (at his birth) said Peter would never contribute to society. My argument has been that people with disabilities contribute to society in the most important way. They help us become better people. I call them 'teachers of our souls.'"

If having known that particular hospital had adopted a futility of care policy, Kellett wouldn't have taken Peter there. She said parents had the right to know these policies existed.

She said, "I have a feeling what's behind (these futility of care policies) is saving money. There's a lot of passive euthanasia going on, especially involving kids with disabilities. We're still devastated over how Peter died."