Hi all. I wasn’t thinking anything about this until it was mentioned today. My niece, via my sister, has cystic fibrosis and I’m pregnant to a man who’s aunt, who passed as a infant, is suspected that she had cystic fibrosis.
What’s the chances of this baby having it? It doesn’t change much but now we’re both worried.
Anyone know a lot about cystic fibrosis?
Anyone know a lot about cystic fibrosis?
Posted in:
Relationships & Marriage, Mental Health, Anxiety & Depression, Pregnancy
9 Replies
My understanding (from a close friend with CF) is that both parents have to be carriers of the mutated gene. So your sister would have one mutated gene and the child’s father would also have to have the mutated gene.
But you really need to confirm this with your GP or even ring the CF foundation. It will be important information to give to your obstetrician and paediatrician.
Thank you. I’m was thinking that due to my sister being a carrier that means that I also am one. I’m honestly really stressed about this and hoping it’s nothing. Just something to scare us.
I can’t currently get in contact with her to try elevate some worry.
Even if you are a carrier your partner would also need to be a carrier, so chances would be lower already, because the chances of you both partnering with someone who carried the mutation would be quite low.
My friend and her brother are the only people in her family who actually have CF and she has many cousins.
Even if you and your partner did happen to be carriers, treatments are improving dramatically the last few years. My friend recently turned 40. The new medications such as orkambi have been total game changers.
Just because your sister is a carrier, does not mean you are. My older kids don't carry any gene but their sibling has cf.
I know heaps. Feel free to reply to this If you need.
If your a carrier, and your partner is a carrier then there is a 1in4 chance of your child being born with it.
You can both get tested, it’s just mouth swabs.
If you both get tested and are carriers, I’d recommend getting the baby tested before birth (this can be done safely at 14weeks but as all procedures - can carry risks)
My close family member passed away at 18 after constant complications. Another family member is living with complications and turns 34 soon. He is considered healthy, but takes an hour a day of nebulisers and therapy to keep himself that way. During cold/flu season he suffers, but he also suffers with hay fever.
Every CF journey is different.
Thank you for your reply. I know it’s very hard to say, but do you know what the chances are of being a carrier if you’re related to someone who has cystic fibrosis?
I’m going to have to contact cystic fibrosis in the morning and gather more information.
We never even thought of this at all😟.
I’m not sure, but I have 4 siblings. ((Same mum and dad)) And only 2 out of us 5 are carriers.
I think in your fear you are missing the point. If your sisters child has CF. That's because your sister and her partner/ child's dad BOTH carry a gene. Which means your mum or dad passed the gene onto your sister. Which makes it a 50/50 chance your mother passed the gene on to you.
Like me, My sister carries the CF gene, but our brother does not. Go and get the blood test done. If you and your partner don't BOTH carry the gene your baby will NOT have cystic fibrosis. You must have TWO genetic defaults to have CF. Even if your husband and you both carry the gene, it still does not mean your baby will have CF. 4 kids in our house. 2 dont carry a gene, 1 does, 1 has CF
If you are both carriers, i believe it's a 1 in 4 chance. I have 2 kids, 1 has the gene but not CF and the other not at all. After my 1st child was born we both got tested and found out my husband was a carrier of the gene. I didn't have the gene, but apparently they couldn't test for all strains? They told us there was a 1 in 600 chance that our 2nd child would have CF.