testing for cystic fibrosis ??

does anyone know if there is such a test for during pregnancy?

my husbands nephew has the condition, and my husbands brother and sister are both carriers of the condition (so its possible my husband is too altho hes never been tested).

we would love and want the baby no matter what but i think id want to be prepared as it can be life threatening and dont think id be able to cope with finding out later on, and would rather be mentally prepared.

has anyone gone thru tests for this? or does anyone have experience of anyone with the conditon and knows the likelihood that our baby will have it? thanks


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  • Hi! I think I have read somewhere that there is a test for Cystic Fibrosis during pregnancy, but not 100% sure. I haven't experienced it myself, but really hope someone can help you with this. Good Luck, Love Rachel XXX
  • Hi
    My sister had Cf and i'm a carrier. There is now a test for CF in pregnancy but you have to have it at 16 weeks. I'm not sure where you live but most areas now test for CF on the Heel prick test that they do on all baby's at 7 days.
  • hi thanks, how would i go about getting myself tested to see if im a carrier? is it just your GP who does it? would they be able to test me while im pregnant tho? i was told the heel prick test test for it, but id rather know before baby was born so i could be more prepared in myself. thanks everyone x


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  • Hi hun havent got much advice but try not to worry too much. Zoey is spot on about this - your child can only be effected if you are also a carrier of CF which is quite unlikely. And even if you are a carrier there's only a 1 in 4 chance your baby could have CF. I remember doing it in GCSE biology lol. I know in a way it is good to be prepared but I don't think it is possible to be prepared for it, and as zoey says a lot of children aren't diagnosed until they are 1 anyway. xxx
  • hi thanks so much, it really worried me becasue up until recently i didnt actually realise how serious the condition is. our nephew is ony expected to live to 20ish, and i read in a newspaper the other day that couples have been advised to abort their baby when it was found they had it. i personally would never abort for personal reasons...but i guess up until now i didnt realise it was such a terrible thing, and dont know how id handle suddenly finding out my childs life had been so drastically shortened. i mean i know it could have all number of things wrong with it that i couldnt possibly know yet, but its just that cf is a thing in the family.

    i am just a worrier in general!!


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  • Hello my cousin has cf and both me and hubby were recently tested. I went to the gp who referred me to the hospital that does genetic testing . They test for all known mutations that cause cf using a sample of saliva. I got my results within 2 weeks and they will rush it if you need them to. I am a carrier but my husband is not. However if you are both carriers you can have an amnioscentisis (sp?) or biopsy of the placenta to test the baby.

    Obviously many people with cf do have quite normal lives and can live til they are 30 but there are also those with much worse strains. My cousin has a life expectancy of only 13 and is often in hospital with infections. I do not wish to worry you i am just telling you my experience.

    Even though you would not consider abortion it is probably worth getting tested to see if you carry it just to put your mind at ease. If you are both carriers you can have the baby tested so that if the baby does have cf you can give birth in a hospital with specialists. All babies are routinely screened for cf at around 5 days old.
  • hi sorry just another question about cf.... i am planning on having a home birth. do you think it would be irresponsible to still go ahead with one if there is a chance the baby could have cf?

    does it need special care straight away and so should i really give birth in hospital?

    or since it wouldnt be diagnosed til after heel prick test a few days later would it make no difference where i gave birth anyway?

    i have appt with consultant on monday and im desperate to ask all these questions. at first, my dilemma was whether to have a home birth or not, which im 90% definite on now, but then becasue of the possibility of cf im unsure whether thats the best thing to do for the baby.

    ideally i would still want to give birth at home.

    i have as gp appt on tues (first available appt) to ask about getting me tested to see if im a carrier of cf so i might not even be one..but i googled it and it said if i am negative it may be false cause test cant detect certain strains (or whatever is the proper term for it).

    so finding out if i am carrier is not accurate anyway unless it says i definitely am a carrier in which case it would be accurate.

    this is all so worrying, theres nothing we can do about it anyway, but im just worrying myself over it.


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  • thanks zoey, will just need to get us tested and take it from there. have consultant on monday too so will ask what would happen if we were both carriers with regards to the home birth. i just wish monday would come faster im so anxious about it, i was so set on a home birth caue i had such a bad time in hosp last time. what will be will be i guess. thanks for all your help x


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  • hi thanks zoey i have just added you (i think it worked anyway)
  • Hello i just wanted to explain what someone will have meant by the false negative. When you are screened they test for the 29 known mutations that carry cf. My husband has none of these so his chance of being a carrier of an unknown mutation is 1 in 350. I am a carrier of the most common form so our combined risk of having a child with cf is 1 in 1400 which is classed as low risk. Because of this i will be treated just like everyone else and have the same birth choices as everyone else.

    I hope you get the news you are hoping for. Also if your parent is a carrier there is a 2 in 4 chance of being a carrier so if your husbands siblings are both carriers it lessens his chance of being one.
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