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Posted by
Penny on October 26, 2000 at 11:43:51:
In Reply to: I have a 4 yr old with CF, and I'm pregnant now posted by Pamela on October 13, 2000 at 21:33:51:
: My daughter has Cystic Fibrosis and she is now 4 yrs old. Things were really hard for her starting out w/ respitory and digestive. She started gaining weight and now weighs over 40 pounds!!! We are very proud of that accomplishment. But although her respitory is better, she still has some problems mainly sinus. Thats a brief history.. Now here's my situation. I have recently found out that we are expecting our 3 child (our 1st is healthy w/o cf). I am happy that i'm pregnant, but very, very worried about the new baby having cf.. I know there is a 1:4 chance of CF but statistics mean nothing to me. And I worry that the new baby is going to take away care from my daughter with CF... Has anyone ever been in my situation, if so, what was the out come and do you have any suggestions for us.
: Thank You,
: Pamela
Pamela,
I was in your situation 4 years ago. My first daughter doesn't have cf. We still to this day do not know
if she is a carrier or not. She has begged us not to make her have a genetic screening unless she
has to have blood work for some other reason. My middle daughter does have cf. She was diagnosed
at 9 months of age. She is now 8 years old and doing great. Actually we just were in the hospital
on Oct. 19th thru Oct. 23rd. Her PFT's were down some and they wanted to see why so they did a
broncoscopy and found absolutely nothing except she still has trachea malacia(narrowing of her trachea)
which may be causing some problems. Any way four years ago I was planning on having my tubes tied
we were happy with our family and didn't want to run the risk of having another child with cf. Well I had talked
to my Drs. and the surgery was planned for June of 96 while the girls were out of school and all.
Well in Feb. 96 I got up sick 3 mornings in a row... i knew what was wrong...i did a pregnancy test
and before I could get the lid on the stick thing it was positive.. in anger and fear I threw the test at
my husband and told him we had messed up big time.. that I was not having this baby and I cried all day
I never have believed in abortions and never will...I just was so scared and worried 1. that this child would
have cf. 2. that he or she would be worse than my daughter and that the girls would have to watch it suffer
and maybe even die.. i just was looney... anyway i went to the dr. and we talked about amnio...i said no
then i had that alpha feta protein done.. well needless to say it came back very high..they wanted to do
a level 3 ultrasound to rule out spinal bifida and to make sure the baby had a brain... well all that went
fine scary but the baby looked fine... I went into premature labor at 23 weeks... finally got that stopped
and then carried the baby 41weeks was induced and had to wind up having a cesarean.. gave birth to
a 9lb 3oz baby boy...... the did cord blood and one week later we found out he was a carrier but did not
have cf.... i remember crying tears of joy and then tears of sadness.... joy that he was ok... but sadness that
we were happy and afraid my daughter would think we didn't love her because she did have cf ..it was
a very difficult time but God has seen us through..my son actually helps take care of his sister alot
he sits with her through the breathing treaments and chest p.t. ...he takes his vitamins with here and
reminds her to take hers.... I am so glad that God saw better than I did because if it had been up to
me I would only have 2 kids... hope this helps hang in there and let God take care of the things that are
too big for you to handle..he is the only one that can... Penny
