My husband and I are both confirmed carriers of the CF gene. We found this out during my pregnancy with my son. I saw this was a catergory here and I thought I would see if there are any others in this situation. It makes it a little difficult to think of having another child and wondering and worrying all nine months.
I was just seeking others advice and encouragement.
Thank you
Also... has anyone here ever been through IVF? Any experiences you can share?
Unfortunately, my sister and brother-in-law didn't know they were carriers. Their 2nd child was diagnosed with CF when he was 7. They have 3 children, the other 2 do not have it. My nephew is now 24 years old and is attending college. There are CF support groups, so check them out.
My dad had CF so I am automatically a carrier. My husband got tested when I was pregnant with my daughter and, thankfully, he was negative. As you know, it is a recessive trait so both parents have to be carriers to have a child with CF. And you would not have to wait the entire nine months to find out. Both amnio and CVS provide the chromosonal analysis to determine if a fetus has the disease. Those tests can be performed at 15 and 11 weeks respectively. I had CVS with my son for other reasons, I was the dreaded age of 35, and it was actually not bad. Most doctors in this area are very well trained in the process and therefore the risk to the baby is VERY low.
For some peace of mind you wouldn't have to wait the entire 9 months. Since you are both a carrier they would probably recommend that you have an amnio done and that would confirm if your child had CF or not. A former coworker of mine and her husband were both CF carriers. They had amnios done with both children and both were negative. They decided to not have more children since they felt blessed to have 2 healthy ones. The choice is your husband's and your's alone but you can get the results prior to baby being born. Good luck with your decision.
I too tested positive as a carrier but my husband did not. All I can remember them telling me before my husband was tested that was if he did come up as a carrier our children have a 1 in 4 chances of having cf. When both parents are carriers of the gene then there is a 25% chance your child will have cf. I know if my husband had tested positive, we decided that we would not take any chances and have no more children. The fact is this test is typically given when you become pregnant. If you and your husband have siblings let them know that you are carriers of this gene, very important for them to know if they are going to have children. I would read up on it as much as you can. There is treatment for cf but no cure. I have read that later in life, typically when they are in there 40's a lung transplant maybe necessary. I hate to scare you, but knowledge is power. May God bless you and your family and help you make the best decision for your family.
My friend in Naperville has a DD w/ CF. Both she and her DH are carriers. Their first child does not have CF but she screened positive after becoming pg w/ DD and found her to hv it. If you want her info, email me off list and I'll give you her email.
This is so scary for you all! This is one of the situations where I would probably opt for CVS testing or some other early-pregnancy test. (I am, thankfully, not a CF carrier, and thus have opted out of all prenatal tests and screens). Keep in mind that a decision to test doesn't necessarily imply that you will abort the baby if it comes up CF positive (and whether you do or not is completely your own business - there is no reason to go into any detail with anyone beyond saying "we lost the baby". No matter how or why you lost the baby - be it accidental or intentional, it is a very difficult thing for a parent to go through and requires emotional support). Some parents simply want a "heads up" so that they know what to expect once their child is born. For others, their decision to carry the baby to term may depend on the test results. And many parents would rather not know because it won't influence their actions in any way and they'd rather not worry if the result were positive. Either way, it's a difficult decision and I hope you and your husband find a solution that you're at peace with. I agree, it makes it tough to decide to take the plunge and get pregnant again.
My step sister and her husband are both CF carriers. They have two children and their younger son has CF. They did not find out until he was diagnosed. He is a great kid, but their lives sure have changed. It is sad to see my little nephew struggling sometimes and the whole family. But also could not imagine life without him!!
S. B.
