Wednesday, May 23, 2018
News Roundup

For Tampa parents, raising a child with Down syndrome is a joy

CARROLLWOOD

A giggling 1-year-old sits at his mother's knees, clapping and bouncing to the beat of a plastic drum.

At a time when most babies are learning to walk, he has yet to crawl. He has trouble controlling his facial muscles and turning sounds into words.

Last April, he had heart surgery.

Now, he has ulcers and rejects solid foods.

For Alicia and Bryan Stevenson, missed milestones and emergency room visits are all part of learning to raise a child with Down syndrome.

More than 5,000 parents adjust to the diagnosis each year in the United States. There are doctors' appointments and therapy sessions, support groups and hours spent researching. According to books the Stevensons received from the hospital, their son Bradlee could grow up to hold a job or he may never leave home.

In October, a California biotech company released a noninvasive prenatal test designed to detect Down syndrome as early as 10 weeks into a pregnancy. The makers of the test, MaterniT21, say it can determine with 99 percent accuracy whether a fetus carries the extra chromosome that results in Down syndrome. Unlike amniocentesis, which removes amniotic fluid using a probing needle, it is a simple blood test.

With positive results in hand, those who have a Down syndrome fetus may be inclined to terminate the pregnancy. The possibilities of increased abortions has many medical professionals contemplating the test's impact.

MaterniT21 wasn't an option when Alicia Stevenson learned she was pregnant.

Doctors didn't view Stevenson's pregnancy as high risk. At 33, she was healthy. Her basic blood work looked good. But as nurses rushed her newborn baby from the delivery room to the neonatal intensive care unit, Alicia knew something was different.

"As soon as he came out, I could see it," Alicia says. "He had the almond-shaped eyes and the crease in his hand. I knew it was Down syndrome."

Later that day, doctors confirmed Alicia's suspicions. They also diagnosed Bradlee with Tetralogy of Fallot, a potentially fatal congenital heart defect common in children with Down syndrome. Other health issues associated with the condition include intestinal difficulties, sensory disturbances, hearing and intellectual impairment.

"The heart problem was the scariest part," Alicia says. "For a long time, we didn't know if he would survive. We didn't have time to really think about anything else. We just wanted him to be healthy."

Alicia doesn't remember a lot about the weeks following Bradlee's initial release from the hospital. She operated on adrenaline. Sometimes she forgot to pack her older children's lunches. Hailey, 7, and Travis, 12, often stayed with sitters.

To protect Bradlee from germs, the Stevensons avoided outside activities and limited family visits. Bradlee was connected to a heart monitor. He slept in a crib by his parents' bed. Sometimes, he would stop breathing.

In hospital waiting rooms, Alicia and Bryan relied on each other for support. They cried together. At home, they stayed awake at night talking. When surgery saved Bradlee's life last April, they expressed hope for the future.

"You have to communicate," Bryan says. "Sometimes you just have to lay it out there. You can't be afraid to feel the emotions."

• • •

Doctors say Bradlee always will have a heart murmur but for now he is doing well. No longer overwhelmed with worry, the Stevensons are reaching out to learn more about Down syndrome. They attend Families Raising, Inspiring, Educating & Nurturing Down Syndromes or FRIENDS, a support group for families that meets monthly in Brandon. There, parents and grandparents share stories and tips.

"I've made friends with some of the other moms there," Alicia says. "Outside of meetings, we call each other."

At home, the Stevensons spend their time assisting Bradlee with what would otherwise come naturally. He wears a helmet 23 hours a day to help shape his head. Recently, he started wearing special shorts to align his hips. His parents massage his cheeks before eating to help keep the food in. During playtime, they work his legs and arms to strengthen his muscles.

"You think you know what it might be like, raising a child with special needs, but really you have no clue until you actually become the parent," Bryan Stevenson says watching his son play. "It's a life-changing experience."

Medical care is the Stevensons' biggest concern. Bradlee sees a physical therapist twice a week. He also visits a speech and occupational therapist. The therapies cost about $1,400 a month. They must also pay for Bradlee's routine checkups at the cardiologist and gastroenterologist.

For now, Alicia stays home while Bryan works full-time in nuclear medicine. Bradlee demands her constant attention. A couple of times, she tried exercising with a Zumba game on the Nintendo Wii while Bradlee sat in his baby seat.

He cried the whole time.

"When he goes to preschool, I might go back to work part-time," Alicia says. "I might need that."

Sometimes strangers at the grocery store ask about Bradlee. People express sympathy, though the Stevensons would prefer to hear congratulations. People look, Alicia says.

"Why do his eyes look like that," children prod, to which Bradlee's sister Hailey huffs and replies, "He just has Down syndrome, so?"

• • •

Doctors perform prenatal testing for Down syndrome for many reasons, says Dr. J. Yankowitz, chair of Obstetrics and Gynecology at the University of South Florida. He says the information is important for women who may choose to terminate. Others seek it out simply to ease anxiety. And there are mothers who want to be prepared to care for their child.

Yankowitz has yet to offer MaterniT21 and is still deciding if he will. He says he doubts the test will greatly influence the abortion rate. Currently, the test is only approved for women with high-risk pregnancies, including women older than 35.

"People who are concerned about Down syndrome and might end the pregnancy are going to undergo the testing needed to do it," Yankowitz says. "People who are against abortion aren't going to do it."

• • •

So we're a regular family, Alicia Stevenson says. Sometimes it's tough. Sometimes it's a joy. Bradlee, she says, is a lesson in unconditional love.

The Stevensons say they understand why some families take advantage of prenatal testing. They think people should have a choice but if given the option, they would always choose Bradlee.

"You have to learn to work with a situation, not against it," Bryan Stevenson says, watching his son play. "When I smile at Bradlee and he smiles back real big, there's no better way to end a day."

Sarah Whitman can be reached at [email protected] or (813) 641-2439.

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