cystic fibrosis suspected in pregnancy

[SolitaA]

Looking for support, I don't want an amnio and I know you have the heel prick test at a few days old, but due to a number of markers identidied on ultrasound the drs think my baby may have CF. However, neither of us have history to our knowledge in our families, so I am unsure if it is possible to be a carrier unknowingly.

Its been a really tough pregnancy with lots of scares and time spent in hospital but now at 30 weeks I feel regular movements and it just feels like a normal pregnancy thankfully.

I am wondering am I stupid to think that I dont feel any different to previous pregnancies (2 children) so therefore this baby does not have CF or any other "genetic abnormality" ?

Also any advice from anyone else who has gone through this would be great.

TIA

You can be a carrier unknowingly - if both you and your DH are carriers you have a chance of passing it on to your child.

sorry you’re going through this

My DD has CF which was picked up at 33 weeks.

Feel free to ask any questions here or DM.

Are you and/or your husband Irish/half Irish. This gene is rife in Ireland. One in 16 people carry it without knowing about it until they bring a child in to world and watch him or her suffer. I think your optimism that you cannot carry the gene because you don't know about it (yet) is too big a risk.

My DD2 has CF, she's 6 now. Picked up through the heel prick test - happy to answer any questions either on here or by PM.

Good luck with the rest of your pregnancy..

Also - you can be a carrier without knowing, both DH and I carry the gene and had no idea until DD2.

This sounds very stressful for you, I'm sorry.
Both DH and I were unknown carriers and can find no cases of CF anywhere in the family. Dd2 was diagnosed at 6 weeks.
I'm guessing they have maybe seen a potential bowel blockage?
You won't need to wait for the heel prick test as they can test the umbilical cord blood as soon as your baby is born.

My son is a CF carrier, as am I, his carrier status was picked up when he was 4 years old because of poor weight gain, so I didn’t know about me being a carrier until after he was tested.

I’ve been in the position of being advised to consider further tests while heavily pregnant. I really really didn’t want an amnio but things looked potentially pretty bleak and I called the ARC helpline and they were so helpful in getting my head around the prenatal testing issues and coming to the decisions that were right for me. Just thought I’d let you know about ARC in case that’s helpful.

My first husband and I were both carriers without knowing and had our baby who was diagnosed with CF.

It is perfectly possible to be carriers without knowing it and the risk of having a child with CF if you are both carriers is 1 in 4 so you could have 2 healthy babies (who may or may not be carriers) before having one with CF.

My son is 11 now and doing well but it is certainly challenging.

I would ask specifics re. what the markers are that are showing up potential CF and how certain the doctors are of this. This said, if you found out the baby had CF now, would you do anything about it? If no, then you may as well carry on as you were and deal with it when you need to.

Happy to provide any more info that you need.

Sending you big hugs at a very stressful time.

My brother and his wife are both carriers and had 2 healthy children and the 3rd pregnancy was CF. This was unknown to us and apparantly they were told that they should advise siblings to be tested. They didn't and we found this out during my pregnancy. DH and I were found to not be carriers bu it was worrying for a while. It is only when 2 parents who are carriers have a child that they have a 1 in 4 chance of a child with CF. But their non CF children have a chance of being carriers for the next generation.