Up the Down Staircase

A New Times writer tells one family's unique story about life with Down Syndrome, and then shares her own

Saturdays are just like anyone else's day off -- a recent one included a trip to the Phoenix Zoo, where the Huffs realized they'd left the stroller in the other car, rented one, but still wound up chasing Tia around the zoo. She insisted on spending most of her time petting the goats, then fell asleep in Kevin's arms.

On another Saturday, Tia's watching Barney (her favorite) on the television in the playroom of her family's Gilbert home. The house is new and clean, and so is the neighborhood, which features a sparkling white Mormon church a few steps from the Huffs' front door. Tyler plays on the floor, then naps. Tia bounces in and out of the room, jumping up onto mom's lap to point out family members in a scrapbook filled with photos of Braxton. "Daddy! Mommy! Baby!" Tia says, her speech hard to decipher if you don't know her well. "No," Shawnie corrects her gently, smiling. "Big brother!"

It's true that Braxton and Tyler look a lot alike. Sometimes Kevin slips and refers to Tyler as Braxton. On this particular day, Tyler is wearing a blue-and-green-striped onesie with Tigger on it. On a bookcase in the Huffs' living room, there's a photograph of Braxton wearing the same outfit.

Kevin Huff, right, says goodbye to Tyler and Shawnie as he heads off to work.
Kevin Huff, right, says goodbye to Tyler and Shawnie as he heads off to work.
Multi-tasking mom: The Huff girls eat their morning 
cereal.
Multi-tasking mom: The Huff girls eat their morning cereal.

Details

Photographs by Peter Scanlon

Kevin and Shawnie married seven years ago. It's his second marriage (the first was childless) and her first. They met at the Mormon church's ward at ASU, where Shawnie was finishing nursing school. Kevin works in electrical systems maintenance for Salt River Project. He was raised in the Valley and she grew up in Prescott, but they figured out that when she was in fourth grade and he was in 10th, they'd been at the same Donny and Marie Osmond festival. It was meant to be.

Both are the middle kids in families with five children, so they figured they'd have four or five kids, too. Shawnie was only 25 when she got pregnant with Braxton, and there's no history of Down syndrome in either of their families, so they never thought about genetic testing, which is usually not recommended for women under 35. It is recommended for a woman who has already had one baby with Down syndrome, but Shawnie did not get an amniocentesis or the other tests that could have determined if her second and third children would have genetic disorders. Shawnie was already certain that she would not terminate the pregnancies.

They'd been through so much with Braxton, she explains, that she couldn't imagine risking a miscarriage by having an amnio, just to satisfy her curiosity.

When Braxton was born, the fact that he had Down syndrome was the least of the Huffs' concerns. An ultrasound late in pregnancy showed that his esophagus wasn't fully developed. As soon as he was born, the nurses took him to a baby warmer and someone tried to stick a tube down his throat. It stopped. It's a rare health problem associated with Down syndrome, and a serious one. Shawnie had not had an epidural, and she was exhausted. Then she started hemorrhaging. Kevin went to intensive care with Braxton. They gave the baby a taste of a lemon swab, used to clean out a newborn's mouth, and Braxton coded.

Shawnie was already in surgery. When she came to, Kevin had shot some video of Braxton, which they watched. Braxton's first operation was less than a day later, to put a feeding tube into his stomach. He looked healthy, and Kevin asked the doctors, "You can fix this, right?"

The doctors just looked at him.

When he was a month and a half old, Braxton had a six-hour operation to connect his esophagus to his stomach. Halfway through the procedure, the surgeon came out and said it wasn't going to work. Ultimately, it did. Braxton had his first bottle ever when he was almost two months old, and came home a week later. His first burp was very exciting. So was his first Cheerio, even if it was only a half.

His entire life, Braxton had such bad reflux that he had to sleep at a sharp incline, Kevin says, holding his arm at an uncomfortable-looking slant. When he left the hospital, the prognosis was good. The Huffs got Braxton signed up for therapy through the state, and started living a relatively normal life.

But there was scarring where the connection was made between the stomach and esophagus. And Braxton was prone to congestion, which meant that he couldn't eat much, which made the small connection start to close up. Every three weeks, he needed his esophagus dilated.

In between, Shawnie says, Braxton was a happy little boy. She stares at the carpet as she talks, dry-eyed. Both she and Kevin keep it together, the whole time, even though this is a tough conversation.

"He always had issues, but he was happy, so happy."

A week after his 1-year immunizations, Braxton started running a high fever -- 102, 103. He was back and forth to the doctor, tested for meningitis, x-rayed. The pediatrician said it was the flu. They went to the doctor on a Tuesday; he sent them home.

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