Cystic Fibrosis????

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Cystic Fibrosis????

Postby Asil70 » Wed Jan 21, 2009 11:44 pm

Hi Ladies,

I was just wondering if any of you have any experience with CF or know anyone who has. I had my 20 wk scan about 2 wks ago and the scan revealed that my little girl has an "Echogenic Bowel". I have read heaps on here and other websites about "Echogenis Foci of the heart" but nothing to do with the bowel. I am starting genetic testing next week for CF to see if dh and i are carriers first of all and if we both are then i will have an amnio. The scan did not show any other soft makers for any other genetic abnormality. Everything looked perfect so I am trying to rule out any serious problems, wishful thinking!!!
My dh and i have no history of CF on either side tho i believe that doesnt matter nor does it matter that we already have 3 healthy sons as there is a 25% chance that both carriers of the CF gene will have one baby with CF.
Any help or info would be greatly appreciated. Thanks ladies.
Me - 40, DH 41, DD 20, DS 9, DS'S 6 (twins)
Brooke Susannah born 25th May, 2009. 7lb 5oz.
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Postby ZiggyGirl » Thu Jan 22, 2009 5:50 am

No experience with CF in the family, but just a hug for you, mama. It's so stressful being in the waiting game stage of diagnosing a potential issue during pregnancy.

When you go for the amnio, ask if they can run a FiSH test. I'm not 100% certain, but I believe that CF is one of the things they can test for with the FiSH, and it only takes 2-3 days for results rather than 2 weeks like a full amnio. They'll do the full amnio too, because it's more comprehensive, but the FiSH is faster and covered by most insurance companies.
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Postby Nicki » Thu Jan 22, 2009 8:41 am

My husband and I have friends who have three children. The youngest has CF. They actually started a foundation in her name, called the "Liv for a Cure" Foundation. (Her name is Olivia, Liv for short.) Actually, I am a high school teacher, and today we are doing a fundraiser at our school called "Jeans for Genes" Day to raise money for CF research. I do know that they detected CF in Olivia because of an intestional blockage that was detected in utero. Her parents, Lisa and Mauro, are wonderful people. They have their email address on their website and I know they would be wonderful in helping to answer your questions.

About 1 out of 30 people are symptomless carriers of the defective CF gene. Two people that are carriers have a 25% chance of having a normal, non carrier child, a 50% chance of having children who are symptomless carriers, and a 25% of having a CF child. (I also teach High School Biology so I'm pretty knowledgeable about genetics.)

Here is a link to their website:

http://www.livforacure.org/

Good luck! I pray and hope you find answers soon.
Nicki - 28, DH Josh - 31
Proud Mommy of Haley Elizabeth born 11-22-03 and Kendall Grace born 6-5-08

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Postby Baby4Staci » Fri Jan 23, 2009 10:36 am

my cousin's baby was diagnosed with an echogenic bowel during her pregancy. She currently has a VERY healthy and beautiful 19 month old little girl.. :)
Mason Anthony born 1/9/07
Savannah Ray born 5/9/09
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Postby Asil70 » Sun Jan 25, 2009 2:49 am

Thanks ladies for your kind words and encouragement. I will try to keep positive and not get too worried until i have some more information and the results of my tests and scans in the next two weeks. Dh and I are hoping like crazy that the bowel rectifies itself and at the next scan it all looks perfect. I will keep you posted :)
Me - 40, DH 41, DD 20, DS 9, DS'S 6 (twins)
Brooke Susannah born 25th May, 2009. 7lb 5oz.
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Postby PixieB » Sun Jan 25, 2009 10:11 pm

I have a good friend who's little girl has CF. She had a twist in her bowels that they couldn't identify on u/s. It basically showed up as a big dark growth, looked like the baby in utero was pregnant. She was born via c-section a bit early, had surgery within 24 hours of birth, and they removed 70% of her bowel because of the twist. Then they found that she had CF.

She's a bright and cheeky 3 year old currently. Has a gastric button thanks to oral aversions, and the CF means she goes on a pump overnight to slowly feed her milk, but she's a vibrant little girl. Happily shows us when she's eating ice, loves swimming, tells enthusiastic stories about George (her favourite toy dragon) and her various favourite movies which she watches over and over and over again :roll:

Good luck. My friend had no idea that she was a carrier, they even tested her pre-baby but the basic test didn't pick up the rare variation she had. It's scary not knowing what's going on, and when the doctors can't give you a clear answer either it's so much harder. You can pull through this. I hope the test results come through clear and soon.
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby PixieB » Sun Jan 25, 2009 10:14 pm

Oh, and there's a community/charity support group in Australia called "65 Roses" for CF families. Named after a preschooler couldn't say Cystic Fibrosis and it came out as 65 Roses :) there's lots of good help out there, you don't have to go it alone.
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby Asil70 » Sat Jan 31, 2009 5:58 pm

Thanks girls,

I had the amnio on Fri the 30th Jan and should get some results tomorrow (Mon) about Tri 21,13 & 18. It will take 2 weeks to find out about CF. Dh and I both had bloods done to see if we are carriers but they also tested for CF with the amnio too. The OB did a thorough scan before the amnio and the bowel is still very much echogenic so we will be so relieved or at least know a bit more after tomorrows phone call. I will KUP and thanks again for your kind words and information. :) Lisa
Me - 40, DH 41, DD 20, DS 9, DS'S 6 (twins)
Brooke Susannah born 25th May, 2009. 7lb 5oz.
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Postby dixiechicken » Sat Jan 31, 2009 7:49 pm

Please KUP. I have some information for you if you need it. I'll wait until you get your results... Prayers for you! :praying:
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby Asil70 » Mon Feb 02, 2009 8:01 pm

Hi girls,

I just got the call from the hospital with my FiSH results. NORMAL!!!! No Trisomy 13,18 or 21 (Downs). I just have to wait now for the full report on the amnio which will take two weeks and wait for the CF results but we are half way there. Thanks for waiting with me girls. That call today has taken such a weight off my shoulders but i wont get too excited just yet as i know the echogenic bowel was still in the scan last Friday so could still be CF yet :? But i do feel a little bit happier :D
Me - 40, DH 41, DD 20, DS 9, DS'S 6 (twins)
Brooke Susannah born 25th May, 2009. 7lb 5oz.
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Postby dixiechicken » Tue Feb 03, 2009 10:13 am

Oh good for you!!! Glad to hear the good news!
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby ZiggyGirl » Tue Feb 03, 2009 6:13 pm

yay for a normal FiSH!
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Postby Asil70 » Wed Feb 04, 2009 11:35 pm

More great news!!! No signs of CF for either myself, dh or baby. What a relief. Still not sure why her bowel is showing echogenic but if it turns out to be a blockage or something similar then at least it can be corrected with surgery or some other means. I am having another scan in 6 weeks so we will see if its still a cause for concern and then investigate further. But for now.......fantastic news!!!!!!!! :jump: :jump: :jump:

Thanks for all your support and words of encouragement and advice. :D Lisa.
Me - 40, DH 41, DD 20, DS 9, DS'S 6 (twins)
Brooke Susannah born 25th May, 2009. 7lb 5oz.
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Postby ZiggyGirl » Thu Feb 05, 2009 9:01 am

Yay!!!
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Postby dixiechicken » Thu Feb 05, 2009 10:06 am

Oh what a relief!!! I know you can breathe easier and enjoy the rest of your pregnancy.

Well, I'm glad you don't need the info I have about CF, but if anyone else does, let me know.
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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