Patient Stories

Cystic Fibrosis Doesn't Stop the Blackwelder Family: Teamwork Is Their Secret

As printed in the Spring 2004 edition of Leaps and Bounds.

The Blackwelder family fights cystic fibrosis (CF).

Of the Blackwelder family's eight children, ages 6 months to 15 years, four have cystic fibrosis (CF). When Taylor, the oldest, was diagnosed shortly after birth, the news came as a shock. All four children with cystic fibrosis require daily breathing treatments to help clear their lungs.

Blending the needs of the children with cystic fibrosis with those who don't have the disease has been a challenge. Teamwork is the key.

Phones ringing, doors banging, snacks opening, a dog barking -- it's just another busy afternoon in the Blackwelder home as the five older kids make their way home from school and are greeted by their three younger siblings. "Normal" is the first word that comes to mind -- until Tracey Blackwelder starts talking about her exceptional family.

Of her eight children, ages 6 months to 15 years, four have cystic fibrosis (CF), a life-threatening, genetic disease that causes chronic lung infections and impairs digestion. When Taylor, the oldest, was diagnosed shortly after birth, the news came as a shock to Tracey and her husband Ralph.

"Taylor was very healthy at birth. But then we got a call saying that based on a routine study on newborns where I delivered, he should be tested for cystic fibrosis at Cincinnati Children's. The results were positive," she explains.

Both parents must carry the cystic fibrosis gene for children to inherit the disease -- but neither Tracey nor Ralph knew they were carriers, nor is there any history of the disease in their families. "Since we didn't have any friends or relatives with the disease, we didn't know what CF was. It was frightening," Tracey says.

The Blackwelder family grew to include Beth, 14; Brent, 12; Jake, 9; Aaron, 8; Ben, 6; Tess, 4; and Bridger, 6 months. Brent, Tess and Bridger also have cystic fibrosis.

"Brent was very ill at birth, and we were told he wouldn't make it, but today he's full of energy and life. As a baby, Tess was on a ventilator for two weeks, in a coma, but she's a fighter. Now she has diabetes and a hard time gaining weight, so she's fed overnight through a tube with a high-calorie formula. Bridger seems healthy right now," Tracey says.

Teaching Responsibility

Teamwork is the key to success in any family, but it's vital to the Blackwelders. All four children with cystic fibrosis require daily breathing treatments to help clear their lungs. They take 50 to 60 enzyme pills a day to aid digestion.

"When the kids turn 10 years old, we start teaching them more responsibility. We have an Excel" spreadsheet so they can check off when they've completed their treatments or taken their pills," Tracey explains.

For their 24-minute breathing treatments, Taylor and Brent use chest vests that vibrate. Taylor does it once a day; Brent, three times a day. "These vests have been lifesavers because they allow the kids to be independent," Tracey says.

Tess and Bridger are too small for the vests, so their parents -- or sister Beth -- clap them on the back and chest to clear their airways of mucus. For all of the children, playing Nintendo, watching TV or just talking while their lungs are cleared makes treatment time more fun.

Parents must be advocates for kids with cystic fibrosis.

Everyone Contributes

Blending the needs of the children with cystic fibrosis with those who don't have the disease has been a challenge for Tracey and Ralph. "We've found that giving our kids without CF little jobs to assist their brothers and sister helps their own coping, and they feel like they know what's going on. We're very open about things," Tracey says.

"Cystic fibrosis has definitely brought us closer together as a family and made us stronger. We work great as a team; my husband helps when he's home. But it can be exhausting," Tracey says. Without the help of their extended family, she says, "We couldn't make this work."

Changing Health Care

The nurses and doctors at Cincinnati Children's have become part of the Blackwelder family too. "We're very thankful for the care we've received. Tess even prays for her doctor, Barbara Chini, MD. Our kids grew up with her, and we know she cares deeply," Tracey says.

Watching their children experience so many tests, treatments and medications has changed Tracey and Ralph. "It's very heartbreaking to have your child be in pain like that. We're learning to be advocates for our kids, speaking up for what they need."

In fact, Tracey is part of a Pursuing Perfect Care Team that is working to redesign care at the Cystic Fibrosis Center at Cincinnati Children's. "We're trying to improve health care, and it's working. As parents, we've opened the eyes of caregivers to what's important to us, and they're working hard to accommodate us," she says.

So where does Tracey Blackwelder find her strength and energy? "My way of coping is getting involved," she says.

She has helped create a support group for families with cystic fibrosis and an annual luncheon for mothers and grandmothers of children with cystic fibrosis. To raise funds for the Cystic Fibrosis Foundation, she recently did something that still amazes her -- she ran in Cincinnati's Flying Pig Marathon as part of a relay team. And she's very proud that Taylor competed as part of a four-man team -- all teenagers with CF.

"Being able to meet other families with CF helps so much," Tracey says. "Families need to know that CF is not a death sentence; we've encouraged our kids to do what they want to do. It means a lot when you can make eye contact with another mom and say, 'I've been through this, and you can do it, too.'"