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XP: Any Cystic Fibrosis moms out there?

RissNRussRissNRuss member
in Special Needs

So I met with the Genetic Counselor/OB Specialist today. My brain is ScRaMbLeD! Here's what I understood:

I carry a rare, but mild Cystic Fibrosis Gene, Hubby carries common and severe gene. We have a 25% chance of our baby having a moderate-severe form of CF. IF we do, it could mean hospitalizations and a shortened lifespan (<40). If we don't, yay. IF Baby inherits Daddy's Gene, either way, AND is a boy, he will have a 99% chance of fertility issues (meaning his lady will likely need IVF or similar). We can choose to have an amnio, or wait til birth to find out. GC recommended amnio, Dr recommended birth. Dr and GC both stated at birth it will be tested for in the state required newborn screening. It's too late for the CVS. They have also recommended my sister, BIL, SIL and any of her future baby making partners be tested pre-conception for all of the above. 

I grew up with a friend with CF, and she's 30 with a beautiful 1 year old now, doing well. It's not that I think CF means any less of a life, but I would love some T&P for our baby to be ok!

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Our lil' diva: late like her Momma: 40 weeks 5 days!
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Re: XP: Any Cystic Fibrosis moms out there?

  • WildBlue22WildBlue22
    My DS will be 1 year old next week and we are in the grey area of CF diagnostic.   My DS has the most common gene and a rare gene (clinical effects of this one is currently in an unknown status).  If I could go back and be given the option of an amnio to determine whether he had gene mutations for CF I would do it. But we didn't have a crystal ball and my carrier screen came up clean so we never even thought twice about it.  Having a newborn is stressful enough but getting that call shortly after birth about his newborn screen and all the additional testing and waiting for results added a whole new level of grief I have never experienced in my whole life but it eventually sets in and you get used to your new normal.  I think knowing early allows you time to process the information, get your head straight, come to terms and be prepared.  On the other side your baby could just be a carrier or not even at all and you can enjoy your pregnancy without this worry.  You can't change what's already in your babies genetic makeup so why not know now?  And like PP said...there are so many new drugs coming out giving new babies with CF a greater lease on life than there has ever been.  Happy and healthy prayers to you and your family!
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  • lvnbraveslvnbraves member
    My little one is 2 and has two copies of DF508. It's considered more severe but those descriptions are largely meaningless. CF varies by person. We know a family with twins who have CF same everything, different presentations one all digestive, one all lung so don't focus on moderate/severe.

    We didn't do amino because it wouldn't change anything for us. What I would highly recommend is having later term u/s due to bowel blockages. This is relatively common for Cfers and in our case meant surgery when our little one was less than 2 days old. The late term u/s will show bowel problems.

    Good luck and know there is plenty to be excited about in the CF world!
    Baby Birthday Ticker Ticker Emergency ileostomy 11/28/10, CF dx on 12/3/10 and ileostomy takedown 1/24/11, feeding tube placed 7/1/11...still going strong! Little one lost 5w5d, 5/27/2012. CP 8/26/2012
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