ATLANTA - 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. <\/p>\n
\"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.\" <\/p>\n
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. <\/p>\n
\"It clogs the airways, which can lead to infections like bronchitis and pneumonia,\" says Dr. Linnemann. \"Over time it can lead to lung damage.\" <\/p>\n
Georgia has been routinely screening newborns for C-F since 2007. <\/p>\n
\"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.\" <\/p>\n
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. <\/p>\n
\"We were just trying to wrap our minds around what were we going to embark on,\" Amanda Hively recalls. <\/p>\n
The twins spent their first 2 to 3 months in a hospital. <\/p>\n
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. <\/p>\n
\"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. <\/p>\n
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. <\/p>\n
\"They have to stay somewhat within a confined area,\" Hively says. \"They're now learning to press buttons and they can stop their treatments.\" <\/p>\n
So the Hivelys are trying to find a balance between living with CF and living their lives. <\/p>\n
\"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. <\/p>\n
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Georgia couple raising twins with cystic fibrosis - FOX 5 Atlanta<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" ATLANTA - 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. Continue reading