Cystic fibrosis

Cmh33 · March 2014

I found out today I'm a carrier of the disease cystic fibrosis. I really hope her dad isn't a carrier. Anyone going through the same thing?

Mizoo · March 2014

My fiance's mother and sister are both known carriers so we met with a genetic counselor to discuss testing options.

You both need to be carriers of one of the genes in order for your child to be affected, and even if you both are carriers there is still a 75% chance that your child will be unaffected.

Meet with a counselor if you'd like to get her father tested, it could bring some peace of mind. We ultimately decided not to pursue any, because our odds were something like 0.5% of our child having CF with the amount of knowledge we have now.

Cmh33 · March 2014

My doctor is suggesting for him to get tested. If he is a carrier as well I have the option to get the baby tested and if she has it terminate the pregnancy. I could never do that

but I have heard it's a horrible way to live. The test to see if she has it is risky anyways so I would rather just wait and if he's a carrier get tested at birth

Mizoo · March 2014

Cmh33 said:

My doctor is suggesting for him to get tested. If he is a carrier as well I have the option to get the baby tested and if she has it terminate the pregnancy. I could never do that but I have heard it's a horrible way to live. The test to see if she has it is risky anyways so I would rather just wait and if he's a carrier get tested at birth

It's always scary to think that something could possibly be wrong. Try to remember that EVEN in the unlikely scenario that the father is also a carrier, there still is a 75% probability that your baby will be healthy and not have CF.

Just take it one step at a time, get dad tested if that's your decision and try not to think about it until you get those results. Talking with a genetic counselor might help calm your nerves, I don't know about other races but if dad is Caucasian, he only has something like a 1 in 23 chance of being a carrier (if I'm remembering correctly.) So, even with you being a known carrier, that's still only about a 1 in 92 shot that your baby will be affected.

Good luck with whatever options you decide to pursue!

dmurrie · March 2014

Cmh33 said:
My doctor is suggesting for him to get tested. If he is a carrier as well I have the option to get the baby tested and if she has it terminate the pregnancy. I could never do that but I have heard it's a horrible way to live. The test to see if she has it is risky anyways so I would rather just wait and if he's a carrier get tested at birth

There are many different mutations of cystic fibrosis. The mildest form has no really noticable symptoms other than male infertility. And a lot of research is being done by a company called Vertex on gene therapy, with some success involving 2 of the mutations. So while it may be a bit more difficult if your child has cf... it may not be, too. Understand that a lot of progress has been made with treatment and care of CF in recent years, so if you're talking to someone older about it, it's become a bit if a different world. Life expectancy continues to rise (even among patients with the more serious mutations of the disease), with expectancy noe into the 40's, as well as improvements made in quality of life and treatment options.

Personally, I would forego the risky testing, especially since it wouldn't change anything that you would do at this time (I'm so happy that you wouldn't terminate the pregnancy because of this). Most states do a mandatory newborn screen for the disease, so you would find out rather quickly after birth. Newborns with CF are usually seen by a specialist within the first two weeks of life to get them off to a good start.

Let me refer you to the cystic fibrosis foundation web site, if you'd like more information:https://www.cff.org/Mobile/AboutCF/

osteofight25 · March 2014

My husband went to get his blood drawn today as I just found out that I am a CF carrier. I'm not too worried about it. The likelihood of both parents being carriers figures into the math also, making the likelihood of having a CF baby with 2 recessive gene copies even lower than what has been stated previously. Knowing the carrier/non carrier status of both parents just prepares you for what you might have to go though with a CF child ahead of time, not that you would have to abort the baby. The stats based on CF, ethnicity, and likelihood of both parents being carriers are below, taken directly from a CF testing consent form.

2. The risk of being a CF carrier depends on race and ethnic background.

a. For European Caucasian and Ashkenazi Jewish couples:

(1) There is a 1 in 25 chance one parent is a carrier.

(2) There is a 1 in 625 chance both parents are carriers.

b. For Hispanic American couples:

(1) There is a 1 in 46 chance one parent is a carrier.

(2) There is a 1 in 2,116 chance both parents are carriers.

c. For African American couples:

(1) There is a 1 in 65 chance one parent is a carrier.

(2) There is a 1 in 4,225 chance both parents are carriers.

d. For Asian American couples:

(1) There is a 1 in 80 chance one parent is a carrier.

(2) There is a 1 in 8,100 chance both parents are carriers.

TinkL0ver · March 2014

As someone who has CF I have a higher chance than most of having a child with the genetic disorder as well. It hasn't stopped me because honestly, there is a high probability that a cure will be produced in the lifetime of my child (if not in my lifetime). They have several things in the pipeline getting tested to make it more like an annoyance and not the life consuming illness its been known as before. Best of wishes to you and yours!

Smallllmin · March 2014

I'm a CF carrier and my sister has CF. Thankfully DH does not carry the gene. There's a 25% chance of having a child with CF if both parents are carriers. Try not to worry about it until you get your partner tested. It may not even matter.

Cmh33 · March 2014

Thank you all so much the reassurance helps. This is the first I've ever really heard of cystic fibrosis.

Myanswer true · March 2014

I am a CF carrier, and we have not opted to have my husband tested. Since a diagnosis can't been confirmed until after the baby is born anyway, I've chosen not to worry myself about it. I had a close friend die of complications from CF in high school, so it does concern me, but I also know she had a severe form of it.

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