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My baby has Cystic Fibrosis :-(  

post #1 of 46
10/1/07 at 11:54pm
Thread Starter 
updated in post #44

Wow, I never in a million years would have thought that my precious little boy would have this disease. We found it through the routine newborn screening, which I have to be thankful for, because we're catching it so early.

So, after a nice, natural birth experience, we're now being thrown into the medical community to treat this disease :

Hold your healthy little ones a little tighter tonight and give them a few extra hugs and kisses for me.
post #2 of 46
10/1/07 at 11:58pm
I'm so sorry
post #3 of 46
10/1/07 at 11:59pm
s mama ... couldn't read and not respond
post #4 of 46
10/2/07 at 12:09am
Quote:
Originally Posted by ktbug View Post
s mama ... couldn't read and not respond
Same here!
post #5 of 46
10/2/07 at 12:11am
Not in your DDC, but reading, and thinking about you and your little one.
post #6 of 46
10/2/07 at 12:23am
oh my! I am so sorry to hear that. It is really good that you caught it so early. Sending lots of love.
Wendi
post #7 of 46
10/2/07 at 12:24am
for your baby and your family
post #8 of 46
10/2/07 at 12:54am
I'm so sorry to hear that.
post #9 of 46
10/2/07 at 1:00am
So sorry mama. Take good care of yourself and please keep us posted.
post #10 of 46
10/2/07 at 2:50am
Oh mama, I am so sorry.. Please hug your little man extra close tonight too..

You'll be in our thoughts and prayers.
post #11 of 46
10/2/07 at 3:33am
I'm so sorry, mama. I know it's hard to face the fact that you need medical help with these things- but I'm convinced that his gentle birth is the best foundation for everything to come.
post #12 of 46
10/2/07 at 5:17am
I'm so sorry mama.
I agree that the fact that you brought your baby gently into the world surely made a big difference for him.
I will be keeping you and your little one and your family in my thoughts. Please take care of yourself as well.
Many, many hugs to you.
post #13 of 46
10/2/07 at 5:38am
Lots of love to you all.. :
post #14 of 46
10/2/07 at 7:20am
Not in your DDC but I wanted to give you hugs and let you know you will be in my thoughts. Stay strong!
post #15 of 46
10/2/07 at 7:38am
I am so sorry mama! Your family will be in my thoughts and prayers. I am so glad that it was detected early!!! Sending you and your little one lots of hugs and love!
post #16 of 46
10/2/07 at 8:54am

Don't know all the details and don't want to give false hope but...

When the newborn screen came back for my daughter, it was postive for cf. They told me this at the same time she was being hospitalized for RSV...talk about your world crumbling in an instant!! Anyway, it was their procedure to follow up with a sweat test to confirm the dx. They ended up doing two and the both were borderline. Finally, they went the genetic testing route where they drew blood from dh and me and tested to see if we were carriers. It turns out that dh is but I am not, so no child of ours could actually have cf...at the most, they would just be a carrier, which is what the original screen picked up and reported as positive.

Now we were warned that the genetic test only looks for the most common mutations of cf, but the chances of a rare mutation are-well, rare.

In any case, I would recommend following up on the screen with some more conclusive tests. Good luck, and I'm hoping for the best for you and your babe.
post #17 of 46
10/2/07 at 10:45am
Thread Starter 
Quote:
Originally Posted by skydancer View Post
When the newborn screen came back for my daughter, it was postive for cf. They told me this at the same time she was being hospitalized for RSV...talk about your world crumbling in an instant!! Anyway, it was their procedure to follow up with a sweat test to confirm the dx. They ended up doing two and the both were borderline. Finally, they went the genetic testing route where they drew blood from dh and me and tested to see if we were carriers. It turns out that dh is but I am not, so no child of ours could actually have cf...at the most, they would just be a carrier, which is what the original screen picked up and reported as positive.

Now we were warned that the genetic test only looks for the most common mutations of cf, but the chances of a rare mutation are-well, rare.

In any case, I would recommend following up on the screen with some more conclusive tests. Good luck, and I'm hoping for the best for you and your babe.

I wish I could hope for better - the sweat test came back at 96 (normal is below 40) We did have his karyotpe drawn yesterday, so we'll see what that comes back as.




everyone else - thank you for your thoughts and support
post #18 of 46
10/2/07 at 10:49am
Andrea--I'm so sorry to hear that! You will be in our thoughts!
post #19 of 46
10/2/07 at 11:48am
I'm so sorry mama
post #20 of 46
10/2/07 at 11:59am
I am so sorry mama.

I used to babysit for a family where 2 out of the 4 children had CF and it was just the saddest thing. I think they have made a lot more medical advances since then (mid-80s) but it is still so scary and sad. I will keep your DS in thoughts.
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