Hi, no our story is different. We actually knew both genes, one from me, 1717 1G>a, and one from his daddy, DF508. There was no doubt our boy had cf. We did also have a sweat test but I never found out his numbers. I was tested while preggo. They found my gene. We then had his daddy get bloodwork which showed the df508. You see ours are among the most common genes out there which they do the initial testing to find. <br><br>But there was a miscommunication at our old hospital and the never gave my son the diagnosis. Everyone missed it and there was no paper trail. It was only after he didn't gain enough weight at 2 mos. that I had to tell our pediatrician that we were carriers. It was horrible. After looking back on it I probably should've sue'd them or something, but I switched hospitals and insurance and now we love his clinic and Dr. He's doing well. <br><br>Don't worry about not knowing...How would you? Your Dr may have the one gene type there in his paperwork already. We had a genetic counselor who gave us all of that info. If your pedi doesn't have it tell him you want to know the gene name and to please find it for you or give you the number of where to find it.<br><br>As for what to watch out for in a newborn with cf some babies have 10 to 15 diapers per day. Our situation was a little different because I breastfeed him and he was doing well at the time. They like to see newborns gain between .5 oz to 1 oz per day. Well Griffin was gaining just over .5 oz per day so they had us do all kinds of appointments with lactation nurses because they thought he wasn't a really efficient eater. This kid drank 6 oz of breastmilk at one weighing! So his diapers were somewhat normal as well, it wasn't really clear. Only the gene test and sweat were what was important in our case.<br><br>My heart broke over and over again when we got the diagnosis, I know how hard this must be for you. When you finally get a definitive answer I hope your little girl doesn't have cf. But if it is positive for cf I want you to know that you're not alone and it will be okay. If it tuns out she is a gene carrier then at least you know in advance and she can be an informed pregnant woman later, kwim? That's another good thing about newborn screening. Take care and let us know if you need anything!
