GOOD NEWS! Baby Alayna does NOT have Cystic Fibrosis!!! Update at Msg 70!

underthecity · Mar 25, 2009

The nurse did an infant screening on our daughter when she was born, and the test came back positive, so they did a second one. The doctor just called and said the baby was found positive for cystic fibrosis and needs to go the hospital for a sweat test and whatever further tests are needed.

This comes as kind of a shock and I'm worried. My wife is upset, and I've skimmed the wikipedia entry on CF which seems kind of grim. Apparently my sister was a "carrier" for CF, but both sisters are alive and well.

Anyone know anything I should know? She's three weeks old, now.

Annayna · Mar 25, 2009

I'm not sure, but I will say a Prayer for you and your family

James81 · Mar 25, 2009

http://en.wikipedia.org/wiki/Cystic_fibrosis

There's the wiki.

It looks like it's more of a hereditary disease (does anybody in your family have it?) and it DOES say that false positive do occur.

Don't worry yourself too much just yet (easier said than done, I know).

regdog · Mar 25, 2009

It's difficult. There is a difference between being a carrier and having the active disease. A carrier usually never becomes sick with the disease and does live a perfectly healthy and normal life. They can however, pass the disease to their children who can either be carriers or become sick.

I will keep my fingers crossed that your daughter is okay. Hopefully the sweat test will be negative. Best of luck to your family.

She is adorable.

RLB · Mar 25, 2009

I worked at the Cystic Fibrosis Foundation for over a year (in Louisville, not too far from you; Louisville also has a great children's hospital many CF patients travel hours for). I did special event planning, so I'm not a medical expert or anything, but I can tell you that the severity differed wildly among different CF folks I knew, so one person's CF story is not going to always match another's. Also, treatments have come light years from where they were even ten-twenty years ago.

At some point down the road, you can call your local CFF chapter if you want; they are a fabulous resource and like to connect with CF families in the area.

I will be praying for you and your family. Best wishes for your daughter.

ETA: She's beautiful, BTW. Congratulations!

Jersey Chick · Mar 25, 2009

I don't know much about CF, but I do know that people can live with it - a friend of mine has two little girls with CF. Treatment's come a long way.

I'll be keeping you all in my thoughts and hoping for the best outcome... {{{HUGS}}}

CaroGirl · Mar 25, 2009

Don't worry until you know for sure. My thoughts are with you and I sincerely hope the definitive test comes up negative.

Kitty Pryde · Mar 25, 2009

She's beautiful!

A baby has CF if BOTH parents carry the gene for it and both parents pass the gene on. If your sister is a carrier, there's a 50% chance you are too. Anyone in your wife's family have CF that you know of?

The sweat test is the 'official' test, so that will tell you for sure. I will think good thoughts for you and your family! Stay strong and keep your AW friends updated.

CACTUSWENDY · Mar 25, 2009

First let me say....what a sweet bundle of joy you have there.

I know nothing to aid you in your questions. I do hope you keep us informed of what you find out.

((((((((((((YOU & YOURS))))))))))

Susie · Mar 25, 2009

Prayers for everyone, Allen. So hoping the test was a false positive.... (((((HUGS)))))

Jean Marie · Mar 25, 2009

Allen, you've got lots of prayers coming your way from all of us. So, just hold tight until you know for sure.

She's beautiful

writerterri · Mar 25, 2009

She's sweeter than ever. I prayed for her. I'll keep her in my prayers. Be strong. Very strong.

(((((HUG)))))

qwerty · Mar 25, 2009

Strong well-wishing vibes coming across the Atlantic from France. Try not to panic or baby will pick up on it. She is beautiful and so is your wife.

Hang in there, we're all praying it's a false alarm.

Q

trickywoo · Mar 25, 2009

I know nothing about CF, but I know how nervewracking it can be to find out something is "wrong" early on.

Our first son had to have abdominal surgery when he was 2 weeks old, and we were all wrecks. I'll be thinking of you and your wife this week. Like everyone has said, try not to worry...

Beautiful pic - she's so sweet!

Wayne K · Mar 25, 2009

This is the kid we all sat through the birth with right? My memory isn't what it used to be. That makes her one of us. I pray the news is good, or that it's treatable and she can drive you nuts and keep you awake for many years to come.

underthecity · Mar 25, 2009

Wayne, yes, this is the same one that experienced the birth reported through AW.

A baby has CF if BOTH parents carry the gene for it and both parents pass the gene on. If your sister is a carrier, there's a 50% chance you are too. Anyone in your wife's family have CF that you know of?

As far as we both know, nobody in either of our families has CF, however, my mother confirmed that my sister is a carrier, but did not pass it to her children. Neither me nor my wife knows if either of us is a carrier. I believe odds are against us both being carriers, at least I hope so.

At first I was in denial, but now I'm leaning toward the next tests coming back negative.

Either way, I'm going to worry until she gets tested again and we hold our breaths for the results.

Maryn · Mar 25, 2009

For what little reassurance it may be, false positives are fairly common. We were once exactly where you are Mrs. Underthecity are, only our baby was older, about six months. The sweat test is apparently definitive, or was back then anyway. They literally wrap your baby's arm in Saran Wrap (the nurse told me no other brand will do) and send you back to the waiting room. With luck, your baby will fuss and cry and work up a lovely sweat, which is exactly what they want. Dress her a bit more warmly than is necessary, and bring a blanket, too.

I agree with whoever said that you should do your best not to worry until you know for sure you have something to worry about. (Yeah, like that's going to happen.)

Maryn, whose daughter did not have CF

Kitty Pryde · Mar 25, 2009

Maryn said:
For what little reassurance it may be, false positives are fairly common. We were once exactly where you are Mrs. Underthecity are, only our baby was older, about six months. The sweat test is apparently definitive, or was back then anyway. They literally wrap your baby's arm in Saran Wrap (the nurse told me no other brand will do) and send you back to the waiting room. With luck, your baby will fuss and cry and work up a lovely sweat, which is exactly what they want. Dress her a bit more warmly than is necessary, and bring a blanket, too.

I agree with whoever said that you should do your best not to worry until you know for sure you have something to worry about. (Yeah, like that's going to happen.)

Maryn, whose daughter did not have CF

I believe they do it a different way now: they put little electrodes on your arm and give you a little zap (feels like a tingle or a tickle according to my college friend, who has taken the test many times) and make you sweat that way. Then they see if the levels of sodium and chloride ions are elevated.

Cabria · Mar 25, 2009

Hi there,

I'm no expert but I did work with CF patients years ago when I worked at nursing. I do know that it is genetic and both parents need to be carriers for a child to have CF - and even then it is a 1 in 4 chance with each pregnancy that a child will have CF. In fact, a friend of ours had two sons and when they had their third son, he was diagnosed with CF. The parents had absolutely no idea that they were both carriers before this.

Continue with the testing and don't jump to any conclusions until you get a definitive diagnosis. Wishing you and your family the very best.

Debbie
p.s. Your baby girl is an angel!

Mandy-Jane · Mar 25, 2009

Hoping that everything works out okay for you. And I have to agree with everyone else. She's just gorgeous and I'd love to give her a cuddle.

underthecity · Mar 25, 2009

Maryn said:
For what little reassurance it may be, false positives are fairly common. We were once exactly where you are Mrs. Underthecity are, only our baby was older, about six months. . .
Maryn, whose daughter did not have CF

Thanks Maryn, this was just was I was hoping to hear, someone else with a similar experience where everything turned out well.

Also, thanks everyone for the well-wishes. Our visit to the hospital is tomorrow and we're both hoping for the best. It's all we can do.

Meanwhile, on a different note, my book cover arrived this evening in an email. I've posted it over in Goals/Accomplishments if anyone cares to look. (Not that I'm trying to hijack my own thread!)

Unique · Mar 26, 2009

((((alan))))

Hold fast to this:

Also, treatments have come light years from where they were even ten-twenty years ago.

wishing you the best, my dear. Don't be afraid. Have courage. Here to talk whenever you need.

stormie · Mar 26, 2009

Please let us know how it goes, Allen, when you can. :Hug2:

and prayers.

underthecity · Mar 26, 2009

We had the sweat test done this morning. First they did the electrode thing for eight minutes, then they wrapped her arms in Saran Wrap for twenty minutes.

We're finding out the results this afternoon. To keep myself busy then, I have to write.

Susie · Mar 26, 2009

Keeping fingers crossed, Allen and sending prayers & good vibes your way. Hope it works out well for you all.

GOOD NEWS! Baby Alayna does NOT have Cystic Fibrosis!!! Update at Msg 70!

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