Maggie’s Random question- Cystic Fibrosis

[DAVID1989]

Know this is random and might not belong here but wanted to ask anyways. So my wife and I just welcomed our first child a few weeks ago. During pregnancy we discovered we were both carriers for cystic Fibrosis. His newborn screen is looking like he may have it but further testing has to be done to confirm or rule out. Not gonna lie, this is pretty rough news to take in. Was wondering if there were any members here who have experience with it. Trying to figure out how life is going to be if there's a positive diagnosis. Feel free to pm me if you don't feel comfortable replying publicly. Spend a lot of time of here so figured there might be some folks who have gone through or are going through it now that might be able to share some advice. Thanks in advance.
David

 

[TimeWillTell]

No personal family experience but I am a doctor. Haven't dealt with CF much in terms of long term management, only in some acute illness cases, but I wanted to just say to take a breath. Being carriers puts your kid at risk but the newborn screening is simply a screening. Screenings by design try to catch every kid but as a consequence have a high false-positive rate. So not all is lost.

If your kiddo does have it it'll be a long tough road. But treatment is much better nowadays and life expectancy as increased dramatically. I can try to answer specific questions you may have but a dedicated pulmonologist will he your greatest asset and resource if your son is positive.

 

[DAVID1989]

No personal family experience but I am a doctor. Haven't dealt with CF much in terms of long term management, only in some acute illness cases, but I wanted to just say to take a breath. Being carriers puts your kid at risk but the newborn screening is simply a screening. Screenings by design try to catch every kid but as a consequence have a high false-positive rate. So not all is lost.

If your kiddo does have it it'll be a long tough road. But treatment is much better nowadays and life expectancy as increased dramatically. I can try to answer specific questions you may have but a dedicated pulmonologist will he your greatest asset and resource if your son is positive.

Thanks for taking the time to reply. Yeah, I'm trying to be positive. More of a "it is what it is" kinda guy. Take it for what it is and do my best to adapt to it and roll with the punches. I know treatment has come a long way and that they can manage a lot of it through lifestyle changes and what have you. Guess mostly I needed to vent a little bit.

 

[TimeWillTell]

Thanks for taking the time to reply. Yeah, I'm trying to be positive. More of a "it is what it is" kinda guy. Take it for what it is and do my best to adapt to it and roll with the punches. I know treatment has come a long way and that they can manage a lot of it through lifestyle changes and what have you. Guess mostly I needed to vent a little bit.

Very understandable, I would need to vent as well. There is a lot of resources available in the CF world as well and if you receive a positive diagnosis if highly recommend looking into these and getting plugged in if only for emotional support and to talk with others with first hand experience from the parent side.

 

[Ringman308]

I’m a new grandpa and I can’t imagine what your going through. Praying for you and your family.

 

[DAVID1989]

Very understandable, I would need to vent as well. There is a lot of resources available in the CF world as well and if you receive a positive diagnosis if highly recommend looking into these and getting plugged in if only for emotional support and to talk with others with first hand experience from the parent side.

Yeah if we get a positive result I'll check them out. Probably be good for my wife and myself to check out. Get some tips on dealing with it all.

I’m a new grandpa and I can’t imagine what your going through. Praying for you and your family.

Thank you sir, I'll take all the prayers we can get. It's a scary feeling not knowing. But the good news is it isn't a death sentence or anything like that. Either way it'll work out. Always try to remind myself that someone else out there has it way worse and is dealing with way more.