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August 2015 Moms
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My nephew just born with CF

candicejeff2013candicejeff2013 member
edited June 2015 in August 2015 Moms
Before getting pregnant with my husband we were unaware of genetic carrier testing. Now that my newborn nephew was just diagnosed with Cystic Fibrosis it has brought about all these emotions and concerns about my own child's health. I am 34 weeks today and have recently been tested for the CF gene due to recent findings (no results yet). Before that there has been NO family history of cystic fibrosis but apparently plenty of people can be carriers and NEVER know it. What an unfortunate finding and how things could have been different if we were all educated on genetic carrier testing and its importance.

Although BOTH parents have to be carriers to possibly pass on to their children, I still have anxiety about it. And it's sad because during a time where I need to be excited and celebrating my first born I am caught up crying for the unfortunate events going on in my brothers life and family.

I just wanted to share as I would recommended genetic carrier testing to any couple that is planning on growing their family. I think the awareness helps and you can be better prepared.
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Re: My nephew just born with CF

  • kedbachkedbach member
    Try to remain positive! Thinking about you!!
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  • breezymeema7breezymeema7 member
    I hope you get results back ASAP.
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  • lifesabeach85lifesabeach85 member
    Thoughts and prayers for you and your family.

    Thanks for posting, knowledge and information can always be so helpful


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  • Miz_LizMiz_Liz member
    T&P for your sweet nephew and family. FXFY that you or DH are not carriers. You are right, knowledge is power, but people should also always make sure their insurance covers any tests, some do not and the CF test is very expensive if it is not covered. Thinking of you!
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  • CaliforniaDream87CaliforniaDream87 member
    Miz_Liz said:

    . You are right, knowledge is power, but people should also always make sure their insurance covers any tests, some do not and the CF test is very expensive if it is not covered.

    This, exactly! Many TnP's for you and your family!
        DS born 8-16-2013
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  • mrswiebe09mrswiebe09 member
    Hope everything turns out OK!
    Thankfully even if you both turn out to be carriers there is only a 1 in 4 chance your baby could have it.
    Sending thoughts and prayers to you and your nephews family!
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  • emmacake08emmacake08 member
    Thinking of you and hoping the test results are in soon!
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  • Lalala2326Lalala2326 member
     I had to get tested for CF right after I found out I was pregnant this time (and it is a very expensive test. Our insurance fortunately covered it, but initial bill was something like $1400). We had no family history either but my sister found out she was a carrier (fortunately her husband was not). I know how hard that wait can be, but my test came back negative, and I hope yours does as well. Thoughts and prayers for you and your nephew and nephew's family.
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  • southerncharm21southerncharm21 member
    I had the test done and found out I was a carrier of CF.. When the nurse called to tell me I freaked out. We are still waiting on DH's test results to come back.
    It's so scary, here I am trying everything in my power to create a healthy child and you find out that and there is absolutely nothing you can do :(
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  • trudytudytrudytudy member
    I hope this makes you feel better for your nephew. I went to high school with a guy who had CF. of course he had health issues and still does but he played sports and is married now. I understand that medicine is really advancing for people with CF.
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  • JNOVA2015JNOVA2015 member
    trudytudy said:

    I hope this makes you feel better for your nephew. I went to high school with a guy who had CF. of course he had health issues and still does but he played sports and is married now. I understand that medicine is really advancing for people with CF.

    This exactly. People with CF are living relatively normal and long lives today compared to 20 years ago. I believe it's approaching 40 years and improving.
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  • mrsrfwiimrsrfwii member
    Miz_Liz said:

    T&P for your sweet nephew and family. FXFY that you or DH are not carriers. You are right, knowledge is power, but people should also always make sure their insurance covers any tests, some do not and the CF test is very expensive if it is not covered. Thinking of you!

    This! This is baby #3 for us and it's only because of my age that we had genetic counseling. This concern was never mentioned with our first two. Our insurance does not cover testing for CF and the testing was like $600 so we opted not to test and hope for the best. Sorry to hear what your brother is going through, they may have opted out of the testing if insurance didn't cover it. Try not to stress and enjoy the remainder of your pregnancy. Thoughts and prayers for you and your brother's family.
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  • jenandbrettjenandbrett member
    I'm sorry your brother is dealing with so much right now, that has to be terrifying. I hope you can all remember that your nephew is a precious little boy and will be a gift to your family.
    Trigger Warning (LC and loss) -- 
    Married May 2008 
    Beautiful daughter Alyssa born April 23, 2011 
    Precious son Isaac born at 34 weeks in April 27, 2014 with Potters Syndrome Type 4 and Down Syndrome - trusted into the arms of Jesus after 3 hours.
    Pregnant again! Due August 8, 2015 please be healthy, little one!

      (results on 2/4/15 showed no Down's and it's a girl!) Lilypie Maternity tickers
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  • Miz_LizMiz_Liz member
    @candicejeff2013 do you know what test your nephew had? This site talks about a newborn screening that gives a lot of false positives when the baby does not actually have CF. https://www.cff.org/AboutCF/Testing/NewbornScreening/
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  • lifesabeach85lifesabeach85 member
    I had no idea some insurance didn't cover the test! That is sad.


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