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Specialized Care for Children with Down Syndrome

October 05, 2016

Amanda Hudspeth knew that babies don’t come with a handbook, but after raising four children with her husband, she felt ready for the surprises a bundle of joy offers.

Then little Harper showed up. A pediatrician at the Fort Smith hospital where Amanda delivered identified symptoms consistent with Down syndrome when her son was just hours old.

 “No one can be prepared for a genetic disorder,” Amanda said. “We had no idea what to do next.”

Within a day, Harper’s condition worsened, his belly was distended and it was obvious he was in pain. He was life-flighted to Arkansas Children’s Hospital, where specialists diagnosed him with Hirschsprung’s disease. His parents learned the condition meant Harper’s colon didn’t extend far enough, and he’d need an immediate colostomy.

“At that point, we didn’t know this would be a blessing in disguise,” Amanda said. “The resources available at Arkansas Children’s for a baby with Down syndrome were things I don’t think we could have gotten anywhere else.”

They visited with a geneticist, a genetic counselor and an advanced practice nurse who specializes in treating children with Down syndrome. Harper spent two additional weeks in the Arkansas Children’s Hospital NICU, as he learned to feed.

The team brought the Hudspeths books, answered all of their questions comprehensively and educated them about the joys and challenges of raising a child with Down syndrome. They also worked closely with Amanda and her husband Jim to develop an approach to Harper’s case, making sure they were connected to every sub-specialty Harper would need to thrive.

“It was such a reassurance for us,” Amanda said. “The team made sure we had everything we could possibly need during that overwhelming time.”

Harper is among the 400 kids who are treated for Down syndrome through Arkansas Children’s Hospital’s Genetics clinic, which meets in Little Rock and Northwest Arkansas. Suzanne Huetter, APN, coordinates care for many of these families, helping them navigate the complex world of seeing multiple specialists for everything from heart problems to lung disease and eye issues.

She says it’s crucial for families to seek care from a comprehensive genetics program. Arkansas Children’s is developing a multidisciplinary Down syndrome clinic to streamline care for these families. They’ll have fewer appointments and need to be at the hospital less often to address the complications Down syndrome presents. That means less time away from the important therapies and early intervention services they’re receiving in daycare or at school.

“Not every child with Down syndrome will see all of the services, but almost all of them need at least two or three specialists,” Huetter said. “This kind of clinic improves communication between the specialties so they’re all aware of the child’s history, therapies, and procedures.”

Today Harper is a healthy 3-year-old and visits the Genetics clinic in Lowell yearly. His colostomy was removed while he was still an infant, and his colon was reconnected so he’s able to use the restroom like anyone else.

Hot wheels dot the floors of the Hudspeth home, where Harper is his 12-year-old brother’s shadow. He adores being spoiled by his four older siblings and is a big helper as Jim restores street rods.

Looking back on those first days after Harper’s birth, Amanda is grateful that Harper’s challenges led them to Arkansas Children’s care.

“The biggest thing is that when we’re there – whether that’s in Lowell or Little Rock – there is a well-thought-out plan for what Harper needs,” Amanda said. “We have everything right at hand.”

If your child has Down syndrome and could benefit from the comprehensive care available at Arkansas Children’s, ask your pediatrician for a referral or call 501-364-4053.

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