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Baby Born with Challenges (Liz Trumpy: type 1 myotonic dystrophy)

Liz Trumpy was an active, apparently healthy New York City police captain who worked out with weights, ran a marathon and participated in mini-triathlons. Married to another police officer, she went to the gym regularly throughout her pregnancy, even on the day before she gave birth.

“If Kelly had been born without health problems, I would have said I had a picture-perfect pregnancy,” says Trumpy.

Liz Trumpy and her daughter, Kelly, who was born in January 2009But, to Trumpy’s shock and that of her doctors, her baby had congenital myotonic muscular dystrophy, the most severe form of the disease. Congenital MMD can cause problems with the heart, lungs, and cognitive functioning, in addition to muscle weakness and wasting.

Kelly had a rough start. She was two weeks late, so doctors induced her birth. When labor failed to progress, and Kelly’s heart rate began to drop, a Caesarean was performed. Kelly didn’t make any sound at first, and then, after a few moments, managed only a weak cry.

Kelly had very low muscle tone, fluid in her lungs and a clubfoot (a foot that’s abnormally turned inward, which can occur from muscle weakness). She almost didn’t survive her first night and had to be rushed to a hospital that had a neonatal intensive care unit, where she spent six weeks before her parents could take her home.

It was only after Kelly’s birth that Trumpy learned she has the adult-onset form of type 1 myotonic dystrophy (MMD1, also sometimes called DM1), a widely variable form of muscular dystrophy that can cause congenital MMD in infants of affected women. (Men with MMD1 can father children with congenital MMD1, although it’s much more likely to occur when the mother is affected. Each child from a mother with MMD1 has a 50-50 chance of having MMD1, although not necessarily the severe, congenital form of the disease.)

Trumpy retired from the police force to take care of Kelly, and their days are full of visits with therapists, including speech, physical, occupational and educational. At 15 months, Kelly can walk using a walker, and talks baby talk, although she has yet to say her first word. She’s learning sign language. Her heart and lungs are all right.

Trumpy wishes she’d known about her MMD so she could have been better prepared for Kelly’s birth. She would have chosen a different hospital and a doctor more familiar with the kinds of issues that can arise for pregnant women with neuromuscular disease. As it was, she felt some members of her medical team were cold to her, as if they blamed her for Kelly’s condition.

Trumpy says she prefers to look forward, not back, and now that she has the support she needs, she’s able to focus on providing Kelly the best future possible. “She is our gift,” Trumpy says.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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