Georgia couple raising twins with cystic fibrosis

- Checkups at Children's Healthcare of Atlanta are a family affair for Amanda Hively and her husband, Matt, and their 20-month old twins Mason and Grayson.

"What they do is fantastic, taking care of 2 kids with cystic fibrosis," says Children's CF specialist Dr. Rachel Linnemann. "Taking care of one kid is hard enough.  It takes a village. And having twins really doubles your work."

Linnemann says CF is an inherited disorder that requires constant work to keep thick, sticky mucus from undermining the twins ability to digest food, grow, and, most importantly, breathe.

"It clogs the airways, which can lead to infections like bronchitis and pneumonia," says Dr. Linnemann.  "Over time it can lead to lung damage."

Georgia has been routinely screening newborns for C-F since 2007.

"What this has allowed us to do is diagnose patients as infants, says Dr. Linnemann.  "This is great because then we can be very preventative."

Amanda Hively was still pregnant with Mason and Grayson when a 20-week ultrasound revealed both babies had a digestive issue. Blood tests confirmed Amanda and her husband are both carriers of a cystic fibrosis gene mutation. That meant each twin had a 1 in 4 chance of having CF.But both boys were born with the disease.

"We were just trying to wrap our minds around what were we going to embark on," Amanda Hively recalls.

The twins spent their first 2 to 3 months in a hospital.

Now, they get 3-month checkups with a team of specialists who wear special gowns to stop the spread of germs, because infections are a constant threat. Dr. Linnemann says life with CF is work in progress.

"So, basically as we've made lots of advances in cystic fibrosis, we've come up with lots of exciting new treatments, but, every time we add a new treatment, that adds to the treatment burden for our patients," she says.

The twins get twice a day vest treatments to break up the thick mucus in their airways. Amanda Hively says getting them to cooperate is getting harder.

"They have to stay somewhat within a confined area," Hively says.  "They're now learning to press buttons and they can stop their treatments."

So the Hivelys are trying to find a balance between living with CF and living their lives.

"There just comes a point where I just have to be like, they're 1 and a half-year-old boys, I have to just let them be boys," she says.

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