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Parents of children with Down syndrome mentor other parents

Karen Garloch
Karen Garloch writes on Health for The Charlotte Observer. Her column appears each Tuesday.

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About two hours after Melissa Thomason gave birth to her son Welles, she and her husband learned their baby had the chromosomal abnormality known as Down syndrome.

“I remember sitting in the hospital room and having a lot of uncertainty about what that diagnosis meant for us, what it meant for him.” She wished she could talk to someone who’d had the same experience.

So when the Down Syndrome Association of Greater Charlotte recruited parents to become mentors for new parents of babies with Down syndrome, Thomason was among the first to sign up. “I felt like I needed to be that person for someone else.”

Through the “First Call” program, Thomason, 32, of Harrisburg, has been matched with two other families who learned of their babies’ Down syndrome through prenatal genetic testing.

Both couples had chosen to continue their pregnancies before they met Thomason, but she wouldn’t have been surprised if they had considered abortion. If she had known in advance, Thomason said, “I would have had serious questions about whether I wanted to continue the pregnancy or not.”

Today though, Welles is 11 months old, and Thomason feels differently.

“I can’t imagine making a decision where he wouldn’t be in my life,” she said. “There’s a misconception that this is going to end your future, end your child’s future, end the way you’ve always envisioned how your life was supposed to go.”

The goal of First Call is to provide parents with accurate, unbiased information, said Terri Leyton, the association’s program director. “We are not pro-choice. We’re not pro-life. We are pro-information. We want you as a parent to make an informed decision … based on what we know of our life as a parent of a child with Down syndrome.”

Since January, the program, adopted from a similar one in Massachusetts, has trained 20 mentors who have been matched with 13 new parents.

With today’s sophisticated prenatal screening tests, parents often get their babies’ diagnoses before birth, and they often meet with genetic counselors like Cam Brasington at Carolinas HealthCare System.

Brasington said some questions can be answered better by other parents: “How has this changed your family? How has this affected your marriage? How has this affected your other kids? Do you wish you’d made another decision?”

Today, people with Down syndrome can go to college, get married and live “into their 60s and 70s,” Brasington said. “It’s a totally different world now for a baby born with Down syndrome than it was even 10 to 20 years ago.”

Garloch: 704-358-5078
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