Peter Kellett and Trisomy 18: Part One

You can hear pain in Mary Kellett. Her 6-year-old son died in 2011. Yet the fact Peter died may not be as painful as the way.

Said 51-year-old Kellett in a telephone interview, "When I was 19 weeks pregnant with him, an ultrasound revealed some markers for what the doctors thought was Trisomy 18."

According to a National Institutes of Health website, Trisomy 18 is a genetic disorder "in which a person has a third copy of material from chromosome 18, instead of the usual two." About half of babies with it die the first week, but many of the rest survive into their teens or adulthood, albeit with severe developmental and medical problems.

Even with that the case, a doctor told Kellett later in her pregnancy that most women choose abortion because "there are no survivors beyond two weeks," said Kellett.

The Kelletts didn't choose abortion. Peter was born in 2005 at 33 weeks and weighed in slightly over three pounds. At his birth, the doctor recommended the Kelletts hold their baby "while he dies," said Kellett. But Peter didn't die.

She said, "So our daughter went online and learned of some adults with Trisomy 18. She printed out the stories. I showed them to the doctor and asked why he'd lied. He shook his head, and said, 'We have to think about resources. Peter will never contribute to society and will be a horrible burden to your family.'"

The Kelletts brought Peter home. He learned to do things doctors said he wouldn't, such as eat by mouth. Doctors said he wouldn't recognize family members and would live a horrible life, but soon he was the happiest and easiest to raise of all their children. She said, "He was never a burden and was everyone's favorite. We loved him."

In 2011, the Kelletts had Peter admitted to a Minneapolis hospital for doctors to remove an appendix. "We thought everything went fine (in the operation), but the next day he died," she said. "Throughout that day, we had been concerned about him bleeding internally."

The doctor said infection from appendicitis had strained Peter's heart to cause death. But the Kelletts weren't believing him. They ordered an independent autopsy, which found no infection. Peter had internally bled to death.

Next week, learn the unexpected and shocking disability news that came out of Peter's death.