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Finding Hope for an Often-Fatal Genetic Disorder


Jul 14 2014
Rather than hide in pain, trisomy 18 parents take to the web to celebrate life.

Molly Merry rests a hand on her pregnant belly, smiling at the uncertainty that lay in her womb. She wasn't always this calm, but she knows her daughter—diagnosed with an often-fatal genetic disorder—is in his plans.

"I felt like he kept telling me, 'Don't hope in the fact about whether she has trisomy 18,'" Molly recounted. "'Hope in the fact that I can give you joy in your circumstances, whether she has it or not.'"

Of those children with t18 that aren't aborted, roughly half make it to birth, and about 90 percent don't survive a year. An extra chromosome often leads to multiple abnormally formed organs, and their cognitive skills never advance beyond that of an 18-month old. Some doctors have so little hope that the children will live, that they refuse to give care, saying that they're "incompatible with life."

After receiving the grim diagnosis, Molly and her husband made it clear abortion wasn't an option. Her Vivien Grace, made in the image of God, was a gift. They were determined that her life, no matter how short, would be a blessing. However, it wasn't until she began making connections through social media that she realized the bleak picture painted in doctors' offices wasn't the only story. There was a mural of beautiful lives being lived in spite of trisomy. Her inbox began to fill with pictures of smiling children living beyond a year.

Those connections are beginning to challenge how the medical community treats children with t18. It's typical that doctors will send parents home and encourage them to enjoy the time they do have. However, parents who want to do more than "comfort care" for their babies now have a wellspring of ideas. They also have names of doctors who are willing to help.

"I think we're taking things back to the medical field, and they're being pushed to look at different ways of treating our kids," said Barb VanHerreweghe, president of Support Organization For Trisomy. Her daughter, who is 33, is one of the oldest people living in the United States with trisomy 18.

Founded in 1979, the organization has converted its phone tree into online support groups, and its newsletter and care books are now free online. Its website is packed with resources, including growth charts for pediatricians and care guides. Its goal is to educate parents about what has worked with some, so they might ask if it's possible for their own children. The stories and advice of t18 parents have become more accessible than ever before.

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Finding Hope for an Often-Fatal Genetic Disorder