Has anyone raised a child with cystic fibrosis while still in the military?

2019-06-30T10:24:48-04:00

We recently found out through genetic testing that future child will have cystic fibrosis. My CFTR mutation is super rare and wan’t even picked up on the initial screening so there’s a slim chance that it’s a non-symptom producing mutation, but we’re preparing to raise a child with CF. I know that he’ll need some specialized care that most military hospitals aren’t equipped to provide. Clinical practice guidelines for CF recommend checkups from a CF care center at least 4 times per year and they’re are only 4 or so posts that have them (JBSA, JBLM, WR, and NMCSD). We’ve been in contact with the EFMP program at the post I’m PCSing to and we’ll be able to use the CF center in Denver for quarterly checkups. If you’ve raised a child with CF while in the military I’m interested to hear your take. Were you able to receive high quality care for you child even though you aren’t in close proximity to a CF center? For long term healthcare should we try to end up living somewhere that has a CF center pretty much within the city or is being within a 1-2 hour drive of one sufficient?

Response by SPC Margaret Higgins made Jun 30 at 2019 10:26 AM

2019-06-30T10:26:27-04:00

CPT Private RallyPoint Member: You and your family have my fervent prayers.

Response by LTC Gary Earls made Jun 30 at 2019 3:05 PM

2019-06-30T15:05:41-04:00

I wish I could give you a straight answer. Our daughter was born with heart defects and spent a lot of time in the children's hospital. We met several kids with CF. In the 1980s they were living into the teens and now those with CF are living into their thirties. There is progress in that disease field. Good luck and will be praying for you and your family.

Response by SPC Samantha Stapley made Jul 1 at 2019 1:32 PM

2019-07-01T13:32:33-04:00

While we did not have a child with CF, we did have a child with a rare genetic condition called Alagille Syndrome. Through the EFMP program and an initial compassionate reassignment, we were able to stay very close to major children's hospitals who had experience with liver disease. We were able to see civilian doctors, and were not expected to stay with any MTF for her care. As a civilian now, we are a little over an hour from a major childrens hospital, and it works very well for us.