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Re: I may be going where you have been. Some guidance wouldn't hurt!

Re: I may be going where you have been. Some guidance wouldn't hurt!

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Posted by tara on September 30, 1999 at 16:52:29:

In Reply to: I may be going where you have been. Some guidance wouldn't hurt! posted by Victoria on September 26, 1999 at 18:54:59:

: Hello,

: My name is Victoria. I have a 3 (almost 4) year old son and my husband (Raymond) and I are 23 weeks pregnant right now. Our son has had no health problems. Our new baby, however, has fetal echogenic bowel (we are told that this is sometimes a genetic marker for cystic fibrosis). We have had genetic testing done and it is inconclusive for cf. (What I mean by that is that I am a carrier of the Delta 508 gene and that my husband is showing up as not being a carrier but since his sister died of cf when he was a child, the Dr.'s think it is possible that he is a carrier of one of the mutations that are not able to be tested for). We have been told that under normal circumstances that the Dr.'s would look at our DNA results and they would conclude that Ashten (the unborn baby) does not have cf. But, since she has the fetal echogenic bowel, we are not totally out of the woods yet and we will not know her cf status until she is born and we must find out some way other than the DNA/ genetic testing.

: I am having a hard time finding anyone who knows the answer to this question: How old will the baby have to be before she can be tested for cf? If any of you know the answer, please let me know. Also, if you have any information that may help me, please pass it on. BTW, I have gotten in touch w/ the cf foundation in my area but the information is just fairly general. If you guys have any specific type suggestions, they would be appreciated.\

: Sincerely,
: Victoria

Hi, Victoria
My name is Tara,my daughter is Alexi.Alexi is 8 weeks old and was diagnosed with CF at 2weeks of age.She did not have any signs of CF.At birth ,in my state(MA)the hospitals now offer a newborn screening.The test is done on the blood they take from the baby's heel(I guess baby's with cf have a high level of IRT in thier blood).They then confirm cf with a sweat test.My daughter is doing well.She still has'nt shown any *real* signs.She is taking enzymes,but only as a precaution,she is 2 months old and weights 12 lbs. and is 23 inches long.At birth she was 7lbs. and 20 inch.

Hope I could be of some help and I wish you lots of luck!!God bless
Tara and Alexi

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