My genetic-testing-came-back-positive question

SnowFlake84 · June 2014

I took the test because it was free through insurance. The RE said it's rare and probably nothing will show up, but it did. So i have a chance of having a child with cystic fibrosis. I don't even know what that is, really. Just a general idea.
DH needs testing now, to see if he's also a carrier. But his results won't be back until after I ovulate,and we are in an IUI cycle.
We meet with a genetics counselor over the phone tonight or tomorrow.

Have any of you tested positive? Did you cancel treatment until DH tested?

I don't even know what we will do if he's positive. I still want a child. I'll love that child. But do I want to bring a child into the world and watch them suffer through lung transplants and get my heart broken when he or she dies so young?

I feel like a horrible person for even asking myself that question. I wouldn't even know about the gene if it weren't for IF, and obviously my parents and grandparents had to be carriers,and my brother and i were healthy...

CarSaidYes · June 2014

MD runs in my family. I am also in the process of getting tested. I've always told myself as I watched my aunt care for her son that I would never allow my child to suffer or myself. I know it sounds awful and shallow and horrible but I'm thinking long term. When I'm 6ft in the ground who will be the care giver then? And will that person treat my child like they deserve to be treated? It's so much more than just loving that child and accepting their disability. It's not a life I want to live. I am not planning on postponing my IUI cycle until after testing. RE said it can be detected via blood work if there is an issue and well talk about options then. DNA coordinator said testing can take up to 10 weeks. That's a long time.

lebradford · June 2014

That *is* really tough. I'm sorry. :-(

I think my questions for the genetic counselor would be: 1) What are the chances that someone is a carrier (thinking about your husband), 2) If both partners are carriers, what are the chances the child will have CF? and probably 3) If you are both carriers, what do they recommend? IVF w/PGD? Donor egg/sperm/embryo?

I think the answers to the first two questions would help me make the short-term decision about whether to move forward with this IUI, and the other question would be thinking about how I wanted to move forward in future cycles.

Good luck making this tough decision. I think any decision is completely acceptable, it is just really personal.

Pintobean39 · June 2014

Losses mentioned

I'm sorry but I'm keeping my FX that your husband isn't a carrier so you won't have to worry about this.

Since we are doing IVF with PGD we had to have genetic testing done because if there was a chance we both were carriers of CF they could test the embroy's for that specific gene. Luckily I wasn't, it is very possible my husband is because he has a few family members that have it but we didn't test him just me.

Having to go through this IVF process and thinking about "what if" has caused a lot of soul searching for us. My best friend is a devout catholic and made the comment to me that if it was her she would just take what God gives her even if the baby only got to live a day that would be what God wanted and she would consider it a blessing. I love her to death and I know she was just telling me her feelings but I feel differently and we have decided any decision we make if we get to that point won't be shared with her. I've cried about this over and over again. Yes we are checking our embryos for any chromosomal problems. I've already lost 1 baby girl that had Edwards syndrome that could possibly have made it to delivery but not lived much longer after that and I lost another to trisomy 16 that never would have made it to delivery. My husband is a MD and see's patients every day that have to deal with some of these problems and he agrees with me that if it's possible to not have a child that we know is going to start it's life off with problems we would try. We also were thinking about we are both very close to 40 and if we had a special needs child who would take care of it when we are old? There is still a small % chance this test can not show some genetic abnormalities and if we do have a child with special needs we will love it regardless and do what ever we need to take care of this child.

Please don't feel like you are a horrible person for feeling this way. I honestly think it's normal to feel that way. I have no advise for the up coming IUI because it is a very personal decision. Just wanted you to know there are other people out there that think the same way you are thinking. I'd be inclined to also ask the genetic counselor what are the % chances that your husband will be a carrier. I just don't know how common this gene is.

csy2947 · June 2014

You DEFINITELY shouldn't feel guilty about considering holding off. Or feel guilty about proceeding. I think you should do two things, first, talk to your doctor about actual risk/probabilitie (like is it a 50% chance or a 10% chance). Then I would look at your predicted long term mental health prognosis on this. If the baby did test positive while you were carrying it and you ended up 'talking options' would you really be able to end the pregnancy? Every person is different but personally, after trying so hard just to get to the positive, I don't know if I could do it. If you think you can and that you'll be ok with it, OR if you are prepared to raise a child with such a difficult disability, then you should go for it. But if any part of you knows that a decision like that would just kill you then taking a month off to prevent that possibility might not be the worst.

Its so hard to accept a cycle off though so I totally understand that part of it.

Whatever you do, its a choice that is just for you and your husband and don't let anyone tell you you made the wrong one, there's no absolute right answer in these types of situations...

I also offer internet hugs

BunnyBerry · June 2014

It sounds very wise to wait until your DH's testing results come back. Very high chances that they are negative. If not, there are so many loving and wise options to consider as you try to plan for your family's and your future children's needs. I hope the wait to hear results goes quickly!

KT416 · June 2014

I have no advice, but just sending hugs your way.

athlete010688 · June 2014

I don't have any advice for you, but wanted to offer hugs! I probably would hold off on the IUI until you got your husband's results back.

nswain85 · June 2014

I have never had any testing like this done before but think that if I had gotten back the same information I would wait to see what DH's came back as. It's is such a hard situation and I'm really sorry you're having to go through that. ::big hugs::

Twinkie0612 · June 2014

The first RE I saw recommended testing for CF, it was inexpensive, so I thought "why not?". I was shocked when my testing came back that I was a carrier. I have no family history of CF. We had my husband tested and he fortunately is not a carrier.

The good thing is that you have options and CF is not a death sentence like other genetic conditions. If my husband had came back as a carrier, we would have moved straight to IVF w/ PGD to screen embryos for CF. If both parents are carriers, you have a 25% chance of having a child with CF, a 50% chance of having a child that is a carrier, and a 25% chance of having a non-carrier child. So that's a 75% chance of having an healthy child even without genetic screening. The good news is that if your husband is not a carrier, you have a 0% chance of having a child with CF, a 50% chance of having a child that is a carrier, and a 50% chance of having an non carrier child.

Here's another statistic that made me feel a little better when we were waiting for DH's tests to come back. For a white caucasian with no family history of CF, your odds of being a carrier is 3%. So there was a 97% chance that my husband was not a carrier. The carrier rate is even lower for other races.

Sewfie · June 2014

We found out that I'm a CF carrier just a few days before we planned our first IUI. I was pretty shocked when I got my results. We decided, with our RE, to put off the IUI until MH's results came back, but proceed with TI (the gene I carry is not likely to cause symptomatic CF). We finally got his results and he is probably not a carrier for CF (apparently it's not 100% definitive, but he doesn't carry the gene I do, so we're basically in the clear), so we're onto IUI, potentially next week.
Our RE may still suggest genetic counseling at my U/S appt Monday, and one of the other RE's in the office offers the service, so at least it will be convenient.

I don't think it is necessarily wrong to want to ask that kind of question (about the difficulties of caring for someone with CF). People with genetic disorders (I can't think of a better way to put that right now) are by no means less worthy than people with "normal/normative" genetics. But- in our case- we don't readily have the necessary support system in place to take care of a child with serious medical issues. That can be change in an emergency situation, but if we have an opportunity to provide the best possible chances for a theoretical child, we will do what we think is best for us. I think this is more because of our personal backgrounds than anything else, and it's definitely NOT the only "right" way to do things. And I'm not going to judge people that feel similarly any more than I'm going to judge people who feel differently, if they are doing what they think is in the best interest of the potential child.

SnowFlake84 · June 2014

Thanks ladies! I read that 1in 25is a carrier,but only 1in 4000are born with the condition.. that is encouraging news...i have counseling tomorrow morning,and then we decide, but i think we will move forward with this cycle.

Want a personalized experience?

My genetic-testing-came-back-positive question

Re: My genetic-testing-came-back-positive question

Me: 26 (IC/PCOS-2000mg of Metformin daily)

DH: 27 (SA results were great minus the slightly low morphology)

Started dating DH in 2002 at 14 years old

Married on 03.01.2014

Officially TTC since April 2014

January 2013- Surprise BFP, m/c at 6 weeks, D&C 2 Weeks later

April 2014- First RE appointment

July 2014- IUI#1-Canx due to scar tissue and polyps. TI with the help of Ovidrel. BFN

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