New study finds outcomes for babies born with trisomy 13 and trisomy 18 “not as lethal as docs once said”

Thanks to Facebook, parents find support for decision not to abort their babies

By Dave Andrusko

This 2013 photo provided by Kara McHenry of North Carolina shows her son, Corbin, who lived for four months after his April 2013 birth. Prenatal tests found trisomy 13; doctors recommended abortion. But she found a support group on Facebook and treatment. "I couldn't just give up," McHenry said. (Kara McHenry)

This 2013 photo provided by Kara McHenry of North Carolina shows her son, Corbin, who lived for four months after his April 2013 birth. Prenatal tests found trisomy 13; doctors recommended abortion. But she found a support group on Facebook and treatment. “I couldn’t just give up,” McHenry said. (Kara McHenry)

Editor’s note. My family and I will be on vacation through September 6. I will occasionally add new items but for the most part we will repost “the best of the best” — the stories our readers have told us they especially liked over the last five months. This first ran August 3.

Each week there are stories I meant to get to–should have gotten to–but didn’t. Here’s a very important story I missed recently.

Severe birth defects not as lethal as docs once said” is the headline to Lindsey Tanner’s Associated Press story. Tanner captures the good news in the first paragraph:

CHICAGO (AP) — Parents of newborns with rare genetic conditions used to hear the grim words that the severe birth defects were “incompatible with life.” Support groups and social media showing the exceptions have changed the landscape. So has mounting research suggesting that not all such babies are doomed to die.

The first two genetic conditions that come to mind are trisomy 13 and trisomy 18. And those were the two that were the focus of a study whose results appeared last month in the Journal of the American Medical Association (JAMA).

To be clear, these are severe abnormalities that involve extra copies of certain chromosomes. But, according to Science Daily.

Among children born with the chromosome disorders trisomy 13 or 18 in Ontario, Canada, early death was the most common outcome, but 10 percent to 13 percent survived for 10 years, according to a study appearing in the July 26 issue of JAMA. Among children who underwent surgical interventions, 1-year survival was high [70%].

To be exact, 71% of children with trisomy 13 and 69% with trisomy 18 were alive one-year after surgery.

Tanner included important added information. A separate study from nine states

found 5-year survival rates of 10 percent to 12 percent for trisomy 13 and 18 children. The highest rates were in those who had aggressive treatment, according to the research, published in April in the American Journal of Medical Genetics.

The Canadian study was conducted by Katherine E. Nelson, M.D., and colleagues, of children at the Hospital for Sick Children, Toronto between April 1991 and March 2012. The study included 174 children with trisomy 13 and 254 children with trisomy 18.

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Tanner also included heartwarming stories of courageous parents who once a prenatal diagnosis was made, were advised to abort. That included Kara McHenry who found a support group on Facebook and a hospital 400 miles away in Pennsylvania willing to offer treatment.

“I couldn’t just give up,” McHenry told Tanner, so the family temporarily moved from North Carolina.

Corbin only lived four months, so did McHenry regret their decision?

No.