Does any out there have a child or know a child who was born with Cystic Fibrosis? I’m expecting in late AUG, early SEP. I found out a few weeks ago that both myself and the father are recessive carriers of the genetic disorder Cystic Fibrosis, which means our child has a 1 in 4 chance of being born with CF. Next week I have to go and see an geneticist, but am completely clueless as what to expect. I know that I have to make the choice over having the ambiotic fluid tested, but that’s pretty dangerous from what I’ve read. And since there isn’t a cure for CF, if the tests results come back positive, there’s nothing I can do. The father is pretty uninvolved and told me to simplily, “let him know if I decide to not keep the baby.” A real prince charming, huh. Any advice or info???

CF like anything varies in severity but for the most part I think it's pretty rare for people with CF to live past their teens if they even get that far. It's constant worry over their health, painful procedures and the chest percussions alone are painful from what I hear.

As far as the amniocentisis goes, I say go ahead and have it. There's only a 4% chance of miscarriage associated with it provided you take the proper precautions and do exactly what your doctor says. I had 2 of them with Katie (the first time they didn't get enough fluid) and suffered no ill effects from it.

You and only you can decide what to do with whatever information you get from the amnio. If, by chance, the test is positve for CF you have some tough decisions to make. Do you carry on with the pregnancy? Do you terminate? I would suggest speaking with some parents of kids who are in all different stages of CF. They can help get a better insight into what you're facing. You'd be giving birth to a child knowing they're going to have a very short and painful life.

I'm praying that your test comes up negative and I'm praying that if it comes up positive that you have the strength and endurance to face whichever course you decide to take. We'll all be here to listen with no judgements and the certainty that you made the best decision for yourself and your family.

well put, basicallyamy

my heart goes out to you and i'll be sending some positive thoughts that the test is negative and the thoughts for the strength to face decisions to come

One of my best friends had CF. He lived to be 28 and didn't have a ton of problems until he hit around 18. He was always on meds, and couldn't play sports competatively, but other then that his life wasn't to terribly different while growing up. When he was 25 he had to have a tube placed in his stomach to be able to eat, and was on oxegyn But he was still happy. But that was Jas too, he was always happy. He was married but never had children. (his choice obviously) Even after he had passed I know his mom never regretted having him. He brought so much joy to so many people. I'll be praying that it comes back negative and you won't have to worry about anything! Keep us posted!

Thank you everyone. I am going to go ahead with the amniocentisis and will keep you posted!