Cystic Fibrosis carrier. Advice on how to get through the next week appreciated...

emmylou5229 · October 2014

My husband and I were notified yesterday that I am a Cystic Fibrosis carrier (of the most common mutation, delta f508). We had already received what we thought was our comprehensive genetic counseling after our NT scan at 12 weeks (and were low risk for Trisonomy 18, Down's Syndrome, etc) so this came as a big shock. I will be 17 weeks tomorrow.

My husband was able to get his blood drawn yesterday afternoon, so now we just need to wait the 7-10 days until we find out whether or not he is a carrier. As you can all imagine, my feelings are ranging from completely-freaking-out-and-fearing-the-worst to understanding the actual odds and that there is a relatively low chance that our child will have CF (completely out of the question if he is not a carrier, and 25% if my husband is a carrier).

I just wanted to see if anyone else has either been through this process before or has thoughts on how to best approach the next week while we sit and wait.

Thanks all.

abiatkinson · October 2014

Hoping everything turns out ok for you!!

starshollow · October 2014

I did not go through it with CF specifically, but I did find out last time that I am a carrier for a genetic disease (Tay Sachs). It was a rough week waiting for H to get his results back. However, even if you are both carriers, it is a 25% change of an affected baby and a 75% of a baby that is just a carrier or completely unaffected. So on the small chance your H is also a carrier, the odds are still in your favor.

Anicole14 · October 2014

I just had a friend go through this. Her baby's testing was done after she was born. She had a lot of doctors tell her it wasn't as big of a deal as it used to be because it's caught so early and medicine has advanced so much, but turns out baby is just a carrier. It's normal to be worried, but try to remember how slim your chances are. Hoping for the best for you and LO!

sagehens47 · October 2014

Have not been through this but I just wanted to say my thoughts are with you. The waiting game is not fun - our minds go to too many bad places. So stay positive and remember the odds are in your favor

fartsandcrafts · October 2014

After my original blood scan, my OB informed me that all genetic testing came back negative. Then a week later, called me and told me that some panels came back late, showing that I am a CF carrier. Fortunately, my husbands test came back negative. I totally understand your worry, but please know that there is nothing you did wrong and nothing you could have done to prevent this. Even if your H tests positive - it's not a diagnosis, just a chance of CF. Sending you positive vibes and hoping for the best!

bsdub · October 2014

>:D< you need one of these right now.

Duffgurl · October 2014

I have a friend who is a CF carrier and her DD has CF although her 1st born did not get CF. I didn't know much about it till she found out while she was pregnant. I say try to get some knowledge on it. Check out CFF.org and also there is a great documentary on Netflix called 65_REDROSES. There may not be a cure as of yet but there are so many things you can do to help it. Try not to worry too much...I know easier said than done. I am sending my T&Ps for you to get a negative result.

Megispreg · October 2014

I found out I was a CF carrier with my last pregnancy. It was tough to wait on my husband's blood work. Thankfully, he is not a carrier. One thing that eased my mind during that time was researching the disease. There are so many amazing medical advances, and more to come in the future. People born today with this disease have such better quality and longevity of life than in the past.

As you mentioned, the chances of the baby having CF are still low. And even if the baby has it, he or she can still lead a relatively normal life. Try to keep that in mind. Big hugs! Best of luck to you.

JAP09-02 · October 2014

Waiting is the worst. Hoping that his test turns out negative.

abbalish · October 2014

Lurking from May 2015...I went through this same situation a few weeks back, so I feel your pain! I was tested at 8 weeks and found to be a carrier of the same mutation as you. H was then tested and luckily he came back negative.

Just try to stay calm while you wait for the results. The statistics are definitely on your side that your H will not be a carrier....and even if he is, statistics will still be on your side (1 out of 4 chance that the baby will actually have CF).

Good luck!

keifekm · October 2014

I hope the wait goes as quickly as possible for you and that everything turns out ok. *hugs*

mommyh7 · October 2014

I am also a CF carrier. I found out after my Initial OB appointment and it came as a complete shock as well. They also offered for my husband to get his blood drawn to see if he is a carrier and he refused. He knows how anxious I can be and he thought if he came back positive as a carrier I would definitely want to do further testing & he did not want to do any invasive testing that could cause miscarriage. (Our last three pregnancies ended in miscarriage) it's tough. Knowing there might be a chance. Hang in there. You're husband went to get his blood drawn so you will have answers soon. I know the next 10 days will seem agonizing, but the genetic counselor told me the chances of both of us being carriers was extremely rare. If you don't mind me asking, what ethnicity are you. they told me it is more common amongst Europeans. Please keep me updated. Keep ur head up:)

emmylou5229 · October 2014

Thank you everyone for your thoughts, prayers and virtual hugs (they actually feel pretty great!). @mommyh7 I am Caucasian, of European descent, but had no idea until this week that the odds of me being a carrier were 1 in 25. My husband is Caucasian as well -- his mother is Irish/Italian, but his father is 100% Slovak. We are praying those genes are the dominant ones!

It is a blessing to be pregnant at all, and I'm trying to keep that in mind this week. Will keep you all posted when we get the results.

AnnaInman · October 2014

Try not to stress. We had the same thing happen and my husband tested negative.

amystan · October 2014

Try not to stress, but it's not the end of the world either way. I have a friend from high school who got pregnancy at 16 and gave birth to a daughter with CF. This girl is the sweetest, happiest little girl. She is deaf, and was in and out of the hospital for a long time but now seems to be doing really well. The mom is now a super advocate for CF, and actually just gave birth to another kid who has another health problem (not CF) and her husband was deployed in the military for awhile. I know this is another persons story and not my own, but the point is is that this young girl made amazing, difficult choices and is probably one of the happiest people I know. She is the person I think about when I am having a bad day and try to put it into perspective. CF kids are happy kids because they know nothing else, but of course thinking of you and wish you didn't even have to think about it.

lindsayr3 · October 2014

I have a small portion of advice for you, I have CF and am pregnant, when I got pregnant we didn't and still don't know if my boyfriend is a carrier. My chances of my child having CF if he is a carrier jumps to 50%. So I understand what you're going through. I have to say though coming from experience of living my entire life with it is that there are so many advances in medicine now that my life has not been a horrible sick life spent in hospitals. Until I was 20 I never spent a night in a hospital. So if it ended up your husband was a carrier and you got the 25% chance and your child had it please don't think the worse or go by what you read on the internet because the Google is the worst place to find information about it and I know how hard it is to not think the worse and to panic but try to relax. I'm going through same thing but my chances are much much higher and we can't find out till the baby is born. So in the mean time I'm trying to relax and enjoy being pregnant! I hope this helped!

Denise91980 · October 2014

I am so sorry you are going through this. I am not a carrier so they didn't test my H, however we have friends ( a couple) who are both carriers. Their first born does have CF, but the younger two do not. He is doing pretty well although they had their moments with him. The treatments are so much more advanced than they used to be but I understand your worries. The best advice I can give you is to relax because stress isn't going to help at all (I know easier said than done). I hope your H winds up not beig a carrier so you don't have to worry, but if so, it doesn't mean your child will have it. My sister and BIL are both carriers and my niece is a carrier as a result. Good luck to you.

rhialto · October 2014

I am also a carrier and the wait was hard. I kept having to remind myself that chances are still very very low. . .

sara6389 · October 2014

I am going through the same thing. I am a carrier for CF but my SO won't have insurance until December so we will be waiting a long time to find out if he has it or not. I have known for a month and a half now so at this point I'm just thinking it is what it is, but there's a slim chance baby will get it so I do worry from time to time. My cousins parents were both carriers and he turned out just fine. Hoping for the best!

emmylou5229 · October 2014

Thanks for the additional encouragement, and thanks especially @lindsayr3 for sharing your story.

Honestly, the first two days after we found out were very difficult, but my husband and I came to terms with it over the weekend, and decided that no matter what happens, we will figure it out together and make it work for our family. There has been peace in knowing that. I started prenatal yoga over the weekend as well, and bought a few pieces of maternity clothing -- have been trying to focus on the fact that I am pregnant and how incredible that is in itself and not worry too much...

I haven't gotten too far down the google rabbit hole of CF stories and information yet, but after a few preliminary searches it does seem like there are many people with CF living happy and productive lives and I'm glad to hear you are one of them! Congratulations on your pregnancy @lindsayr3 I hope it is a happy and healthy one!

emmylou5229 · October 2014

Great news - my husband got his bloodwork back and he is NOT a carrier of CF! Breathing a huge sigh of relief and am so thankful for all of your thoughts and kind words over the course of the last week. xo

sagehens47 · October 2014

Congrats! Glad the worry is over for you

catlover790 · October 2014

So glad you got good results!

emilyssymonds · October 2014

So happy for you! Congratulations on your good news.

keifekm · October 2014

Glad to hear you got good news.

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