Prenatal Test - Amnio vs. CVS

[anonymous]

Any experiences with or opinions of amnio vs CVS would really be appreciated.

Our first and only child has CF and we are pregnant again. My wife is 9 weeks pregnant now and we are trying to decide between the 2 tests. We've read quite a bit about about both tests, so we know the basics. We we are hoping that other parents of kids with CF could share their experience with testing and which test they chose.

Thanks,

Barry & Jill (Mom and Dad to Derek - 15 months old with CF).

 

[anonymous]

I have 3 children, my middle child has CF. When I got pregnant with my last child we knew the chances of her having CF, we chose not to have any testing done at all, we knew that we were still going to have our baby. When she was born she had a bowel obstruction and was transported to Childrens Hospital where they thought that she should be treated as if she had CF. It was a long hard wait but 2 weeks later we were told that our baby did not have CF and she was not even a carrier.
I know that it will be a long pregnancy so hang in there.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I've had two CVS tests. Both were extremely positive experiences, but as I'm sure you've read, so much depends on the doctor performing the test. Our daughter with the first test came back as a carrier and we're expecting a baby Sept. 4 that unfortunately got both of the genes and has CF. We knew that we wanted our baby regardless of the test results, but for us, we also wanted the time to prepare and learn about CF if that were necessary.

My husband and I were able to speak to the doctor who performed the test beforehand, and through his office, got all of his statistics ... how many tests he performs, his success rate, etc. I'm sure you've already come across this in your research, but one of the most important factors is how often the doctor performs the procedure. Our doctor had a success rate with CVS a little higher than than the stated average success rate for amnios, which was very important to us obviously.

As far as the procedure itself, it was painless and although there was mild discomfort, it was brief, and nothing worse than the standard internal exam. All of the reading we had done beforehand advised the patient to avoid exercise and heavy lifting, but that I could go about the rest of my day pretty much as normal. The doctor was much more cautious though, and before I was discharged told me to lay on the couch for as much as possible the remainder of the day. Both days my husband took the day off of work and helped me lay low.

If you have any questions on anything specific or just want more detail on my experience, let me know. (I'm groggy from lack of sleep and probably not making as much sense here as I typically would)

-- Jenica

 

[anonymous]

Hello my name is jennifer i have cf. Me and my boyfriend are expecting our first child. We dont know if he is a carrier..we havent had him tested. But we have discussed our options about amnio. and we decided that we would rather just wait until the baby was born to find out if she's going to be sick. I felt like if we know now then we would just worry the rest of this pregnancy....so we want to just wait and find out. Hopefully she wont be sick but if she is we will love her just as much..Either way she's already very loved and i cant wait to meet her...so good luck on what ever you decide!!!!!!


Jennifer 23w/cf

 

[js7881]

When I was pregnant with my daughter they found a echogenic bowel on an ultrasound. I had an amnio done and found out she had CF. I would not change a thing. I am so GLAD that I had the amnio. My advice would be to have an amnio done you will not regret it. You will know in like 2 weeks and you can prepare yourself for her birth.

Just my thoughts

 

[anonymous]

We had an amnio at 19 weeks and we are glad we did. We grieved for the next few months and were able to come to terms with the diagnosis. It also gave us time to prepare for his birth. When he was born I was able to look at him as my son and I only cried tears of JOY JOY JOY! He is beautiful and a blessing and we are so greatful he is here! Speaking only for myself, I think if I had waited until the birth and then found out it would have made it much harder on me (I have a history of post pardum depression though). That is just my feeling on it. Best of luck to you with what you choose.

 

[anonymous]

Thanks for all of the replies. Interestingly we had gotten lots of statistics on cvs from the hospital that made it sound like it was comparable to amnio, then we called back and asked how many times they did cvs per year compared to amnio. in seattle they do around 24 cvs a year and hundreds of amnios. It really blew me away that the hospital was stating very low probabilities for many of the risks of cvs, and they didnt tell us how uncommon the cvs is done.

Thanks again. beautiful pictures js.

Barry & Jill (Mom and Dad to Derek - 15 months old with CF).

 

[anonymous]

Hi Barry and Jill,
I think the reason the CVS is done so rarely is because you have such a small window of time to do it. I think most women decide to have an amnio done after their AFP results come back abnormal and that is much later in pregnancy.
My story is very similar to Jenica's. I had an amnio done on March 22nd and on April 18th we were told we were having a boy and he inherited both genes. We have a daughter who is 3 and is only a carrier.
In my area the hospitals are required to do so many CVS's a year to keep up their certification and we didn't have any hospital's in my area who were qualified according to my insurance, so we did the amnio when I was 15 weeks. I can't say it was a good experience, it was a terrible rainy day and my husband wasn't able to go with me because he couldn't get out of work. I had to drive an hour and a half to the hospital and it was a little painful and caused me a lot of cramping afterwards. But I do not regret doing it. I really needed time to prepare. I think it may come a little easier to parents who already have a child with CF because you know what to expect but I really needed to know so I could grieve the loss of my healthy baby and learn to live with this diagnosis. But, the amnio wasn't that bad. Now I'm 35 weeks and I've been told I may have to have another amnio in two weeks to see if the baby's lungs are mature enough to induce labor, my baby is measuring really big (already a 7 pounder) and he has a dilating bowel which is causing a bit of concern.
Please keep us posted about your baby, I will be thinking of you and hoping your results are negative for CF.
Jen

 

[anonymous]

Only 24 a year would make me nervous too! The doctor we went to performs CVS procedures every Monday and Thursday, but does several tests on each of those days. One of the benefits of the CVS is that the test is done earlier and you get the results back very quickly (the first time was a week, the second time 3 days), so there isn't a lot of waiting on pins and needles. But like Jennifer said, you might be more prepared for a positive test result considering you're already familiar with CF with your first child.

Either way you decide, I hope you get negative results, and best wishes for your family!

-- Jenica

 

[jenniferp]

Jenica-
How is your pregnancy going? Have you had a recent u/s? Are they noticing any dilation of the bowel or is the baby looking good in that area?
I have come to terms with this but there is still the moment, maybe when I'm sitting in my tub relaxing when suddenly complete terror will come over me out of no where and I begin to think horrible things. I quickly pull myself together by reminding myself my son will be fine, but there is still that cloud of the uknown that seems to linger around.
I can say this; I'm sick and tired of maternity clothes! I'm still working so it's a real pain to get up at 5:45 in the morning and stand in front of a closet full of clothes that don't fit. It seems the bigger my belly gets the farther my shirts want to rise, and everything Motherhood sales SHRINKS when you wash it! Or am I just growing that fast.lol
This baby has no lack of movement that's for sure, he moves around all day, with such great force sometimes I feel like he will push his way out through my belly button.lol
I have an u/s tomorrow and they will check to see if the bowel has dilated any more. I hope it's gone away and is back to normal.
I'm still working on getting into the hospital with the NICU, I don't know why my Dr is being so stuburn about it. My Perinatologist really wants me to delivery their and he might try to pull some strings to make it happen. He wants to induce at 37 weeks if the bowel continues to show dilation, and my Dr has agreed that if the Perinatologist decides to induce he will allow it to be done there.
I've got everything ready for this little guy, his room is done, baby gear and clothes are all at home waiting for him. The only thing missing is him. My three year old daughter just can't wait, she talks about him everyday, she has become very impatient. I watch a lot of those birthing shows, like Baby Story, and Birth Day so my daughter has seen a few births to say the least, well Saturday my husband and I were sitting on the back porch with her and she said, "Mommy is baby Andrew ready to come out?" when I told her he wasn't ready just yet she told me I needed to put my feet up on the chair and start pushing! It cracked us up, I guess she thinks I'm just not doing my part.
I hope all goes well with your labor and delivery.

 

[anonymous]

Hi, Jen. Looks like our babies are due about a day apart!

I've only had the one standard ultrasound at the 18 week mark, and they didnt' see anything there as far as dilation of the bowel. Our baby isn't expected to have any digestive issues because of her mutation, so I'm not sure if the digestive issues and the meconium illeous are related at all? I had been assuming that I would have additional ultrasounds as the date gets closer, but I've been told that it's not necessary.

I feel enormous this go-round, and like you, can't wait to meet this little one! I quit working after my daughter was born about 18 months ago, and I feel for you, having to get dressed every day for work ... I do NOT miss maternity nylons one bit.

Definitely let us know what they find at tomorrow's appointment. I'm hoping for good news. At the same time, it would be great if they can induce you, if only so your doctor allows you to give birth at the hospital with a NICU. I can't believe the resistance to that in the first place! Anyway, best wishes, and keep us updated.

-- Jenica

 

[jenniferp]

Jenica- I'll definately post after my u/s and let ya know how it went.
What mutations do you and your husband have? I have G551D and my husband is DF508, from what I've read and been told these are the most common mutations and we should expect a classic case of CF. I wish we had the rare ones, that don't cause such problems.

 

[anonymous]

I had my appointment yesterday and the u/s showed the dilation at 1.2 cm which is pretty much the same as a month ago. I met with my military physician this morning and he has decided to induce labor at 38 weeks. The u/s showed baby weighs 7 pounds 8 ounces so he is well big enough already and I think given another two weeks he should be HUGE! My Dr. says he will plan a day and make sure everyone is on stand-by in the event my baby needs to be transported to the NICU in Charleston. I'm so worried, I really hope everything goes well and he doesn't need to be flown away. So, it looks like I will meet this little guy around 8/22.
Jen