CF Moms....if you had known would you have?

lexi0408

I recently found out I'm pregnant with my husbands and my second child (I'm only about 5 weeks so there's a long way to go) we found out with our first child that we were both carriers for CF (2 different mutations same 25% chance) our 1st is not even a carrier for CF but that makes me a little nervous that I used all our good luck "juice" up and this baby is doomed, I know rationally it doesn't work like that, but we had some fertility issues  and this baby was a bit of a surprise, but definitely a good one, that being said I'm not sure I want to take the risks of a CVS (if i did anything i'd want earlier rather than later) plus I'm not sure that the doctors would even consider doing one since my 1st pregnancy was riddled with complications including a partial placental abruption at 29 weeks, Pre-e and HELLP at 32weeks ending my pregnacy about 2 months early. 

I guess my question is: Would you have done the CVS no matter what the risks or would you have let God, Fate, whatever you believe in hold all the cards?

 

Thank in advance!!

lvnbraves

My son has CF.  We found out when I was pregnant that we were both carriers.  

CVS is a very personal decision so my decision was and will be for future CVS to not get it done.  For me, it's too risky.  

What we would have found out is that he had CF and nothing would have changed.  We wouldn't abort, so we would have had an added burden.

I wouldn't have been able to live with myself if the baby had been healthy and CVS caused a miscarriage.

And I have a beautiful as healthy as he can be 19 month old.  

I would also encourage you to read about the coming technologies in CF care.  Many speculate that children born today with CF should live into their 50's and beyond.  Obviously that won't be true for everyone, but there are no guarantees. 

JaimieLee

My daughter has CF. We found out when I was 12 weeks PG through CVS testing. It was a GODSEND. I honestly cannot explain how much better it was to know and be able to plan. People make it sound like the only reason to have a cvs is if you want to abort. Not the case AT ALL. We always knew we were going to keep the baby, but felt it wouldn't be fair (or smart) to ignore the odds and just hope for a healthy baby. The flip side to not finding out is that you spend your whole pregnancy hoping and wishing for a healthy baby. So when you don't get it, the let down is huge. I've seen it happen countless times to CF moms. I could not imagine spending my entire pregnancy worrying or worse, living in denial. Having a kid with CF is not the end of the world, but it does take some preparation. For example, I was able to switch doctors in order to deliver at the top nicu in our area. I had special monitoring to watch for certain CF-related complications that can occur. Which was very fortunate since my daughter did in fact suffer from a meconium ileus and required surgery to remove part of her intestine when she was 2 days old. Since we knew her diagnosis, we had the best surgeons lined up and ready, we already had her CF care team in place, and the nicu was expecting us and we met the head neonatologist and np way in advance. They were able to answer any questions we had. It was such a huge relief. The CVS procedure itself is really very safe, if you do your due diligence and go to a doctor that is experienced. The rate of a miscarriage is actually quite similar to that of an amnio and very, very rare. It's a personal choice, but I wanted to have you hear from someone who has been through it (twice now - with different results for each). Getting a cvs does not mean you care less about your baby or want to abort. For me, it meant that I cared enough to make sure that she had the best care in place and that I was mentally prepared.

lexi0408

Thank you ladies....one more question is there a way to make sure the doctor i'd be using to do a CVS has done more than a handful of them? IF I go through with this I want to know he/she knows EXACTLY what they're doing!

lvnbraves

Like I said, it's a very personal decision and you'll see all different perspectives!

We are also very fortunate that we live in an area with some of the best medical care in the world, so we didn't have to worry about lining everything up, it's already here!

 

JaimieLee

lexi0408:

Thank you ladies....one more question is there a way to make sure the doctor i'd be using to do a CVS has done more than a handful of them? IF I go through with this I want to know he/she knows EXACTLY what they're doing!

I would check with your OB/GYN. The procedure should take place through Maternal Fetal Medicine. I would ask to meet with the doctor that will be doing the procedure, that way you can ask any questions, get an idea of how experienced they are, etc. I believe you will have to attend a counseling session prior to the procedure anyway. Don't be afraid to ask questions - ask for m/c rates, risks, etc. Go with your gut - mommy instinct tends to be right on!  Even if you decide not to do it after speaking with them, there is no harmin finding out more about it.  Feel free to PM me with any questions. I know this has to be stressful for you   I meant to tell you earlier, I totally understand where you are coming from when you say you are worried you used up all your luck and don't want to jinx anything. We had a miscarriage with my first pregnancy before Cass and I struggled with the decision to get the CVS (at first).  But after doing my research I felt very comfortable going forward with it. After Cass we had a failed IVF and were told that I was a poor responder and there was very little chance that I could get pg on my own. So once we found out I was pg with this little guy we considered it a miracle. I still did not even hesitate to opt for the CVS. IMO, the risks of not getting it far exceed the .3% risk of a miscarriage. Hope that helps!