Anyone elect NOT to do genetic testing at age 35?

[Anonymous]

I almost opted not to do the first trimester screening but did so after urging from the husband. Our initial results, confirmed via an amnio later on, were not so starry. I too thought regardless, my decision would not change. Until I was informed that my baby had a fatal fetal abnormality with some additional factors that impacted my own health. I don't want to be negative but it may be important to think about what you need to know in terms of preparation. If your decision will remain the same, will it help you to know that your child may have a condition that requires extra care? Will it make you feel more at ease to know everything is ok? You may need to think about additional expenses, etc. if there is an issue. Will it help you emotionally to know what to expect? Of course, I certainly hope this is not the case but ask those questions and discuss it with your significant other before you rule it out.
Never in a million years did I think I would have to go through an experience like this and I am under 35. Best of luck!

[Anonymous]

Anonymous wrote:I almost opted not to do the first trimester screening but did so after urging from the husband. Our initial results, confirmed via an amnio later on, were not so starry. I too thought regardless, my decision would not change. Until I was informed that my baby had a fatal fetal abnormality with some additional factors that impacted my own health. I don't want to be negative but it may be important to think about what you need to know in terms of preparation. If your decision will remain the same, will it help you to know that your child may have a condition that requires extra care? Will it make you feel more at ease to know everything is ok? You may need to think about additional expenses, etc. if there is an issue. Will it help you emotionally to know what to expect? Of course, I certainly hope this is not the case but ask those questions and discuss it with your significant other before you rule it out.
Never in a million years did I think I would have to go through an experience like this and I am under 35. Best of luck!

12:26 - first let me say how sorry I am that you had to experience this. I honestly can't even imagine. I am curious, would the 20 week ultrasound have picked up on the abnormality (e.g. enlarged heart, fewer than normal chambers, short limbs, inadequate brain development, etc.)? We have something going on and have so far not been given any indication through ultrasound that there are any physical abnormalities, but I chose to forego testing so of course no one can say for sure that our baby doesn't have an abnormality of some kind.

[Anonymous]

I talked it over with my doc and basically said that I only wanted to find out if something was catastrophically wrong (no brain, open spine, anything that is incompatible with life). I wouldn't go through with a pregnancy like that. I'm friends with an OB nurse who was at the delivery of a baby with no brain whose mother was ardently pro-life, and she said that it was the most awful experience of her life and she felt horrible seeing the poor baby die immediately and that she thought it was kinder to terminate earlier. Anyway, my doc and I agreed to just do the quad screen (a blood draw) and do the 20 week ultrasound, where you can see things like serious spine/heart/brain abnormalities. Everything turned out fine for me. I'm glad I didn't do the amnio, but I'm also happy to know that my unborn child seems perfectly normal without having to do inv tests.

[Anonymous]

I am 29, pregnant with #2 and jumped at the chance of getting a non-invasive first trimester screen, because I feel better when I know

My 30 something friend refused screening until she found out during her second trimester that her baby would hardly be viable at term. The abnormalities could easily have been picked up much earlier by an amnio. If done by an experienced amnio practitioner, the risk of injury is decreased, and given your age, may be lower than the one in 350 risk of Down syndrome.

Believe me, it is better to make decisions like these sooner rather than later in the pregnancy.

[Anonymous]

To the question - yes, I believe so. If it is something such as my experience, that can be confirmed through an amnio. My screening came back abnormal and I was asked to return to maternal and fetal medicine to do an ultrasound there as oppsoed to the scheduled one with the OB. It was during the ultrasound when the doctor was not seeing what he wanted to see that he strongly suggested an amnio. I had already discussed that with my OB before the ultrasound and had planned to do it if it was recommended. The FISH results, which are the initial results from the amnio, came back within 2 days and confirmed what the doctor was seeing on the ultrasound (but not verbalizing completely since he was not 100%). The thing I will caution is that in this type of situation, when it is diagnosed at this stage in the pregnancy, you have limited options if you choose to terminate and there are timing issues. I thought long and hard about what I would do and the night I went home from the amnio, prayed that it was only a heart defect or that if it was something challenging but viable, we'd deal with it. These are difficult decisions and I believe that either way, it is important to know what may transpire. That way you can be as prepared as possible. The amnio was not that bad and was quick. The doctor used the ultrasound, guided by a technician, along with assistance from a nurse to do it.
But to the original poster, I think asking yourself the questions and discussion with your significant other will help you make the right decision for you. Again, best of luck with the pregnancy. And to the PP, best of luck. Your OB is the best resource and never be afraid to ask questions.

[Anonymous]

I've have two healthy boys. For both, I was under 35 and did the NT screen at 10-12 weeks and nothing else, but in both cases I received positive results. I am now pregnant with my third and will have turned 35 a few months before I deliver. I am leaning toward having at least the NT screen, but very likely also an amnio. I really can't say what I'd do if given bad results, I really don't know. But I do want the choice. I know I will love my child no matter what, but I feel like I have a responsibility to my two other children to also do what is best for them. That doesn't mean I'd choose to terminate if I'm told I have a child with DS, but I really would need to think about it and at the very least, mentally and financially prepare myself and my family.

[Anonymous]

I will be 34 when I deliver my first pregnancy. Even though I'm very pro-life, we did the non-invasive screenings just so we could know in case there were problems.

[Anonymous]

OP here. Thanks everyone for being so respectful and for sharing your personal experiences. It is really helpful to me to hear all these perspectives as I am thinking through this.

Someone used the term "I wanted the choice," and I think this is the crux of my conflict. I don't know if I want a choice with this decision. I can see why people get the test results so they can plan ahead or deal with issues. But the truth is also that 90% of people with Down Syndrome pregnancies are now choosing to terminate.

To me, the knowledge that my child is disabled would clearly place pressure (maybe from family, friends, society) to terminate. And I don't want to feel "selfish" or guilty about choosing to keep the child and putting strain on my family. Or thinking later on either way that I made a bad choice, that it all fell to me. This is really my fear, the pressure to terminate as being the more "responsible" decision.

[Anonymous]

I know of one situation where an over 40 mom had CVS. Pregnancy ended in a miscarriage. She has not been able to get pregnant again, in spite of fertility treatments.

The CVS results were normal.

[Anonymous]

12:26, that is a very sobering story.

I was pregnant at 41 and 44 and did no testing, either time. That actually seems a bit cavalier now and I'm not sure I'd make the same decision again.

[Anonymous]

Anonymous wrote:OP here. Thanks everyone for being so respectful and for sharing your personal experiences. It is really helpful to me to hear all these perspectives as I am thinking through this.

Someone used the term "I wanted the choice," and I think this is the crux of my conflict. I don't know if I want a choice with this decision. I can see why people get the test results so they can plan ahead or deal with issues. But the truth is also that 90% of people with Down Syndrome pregnancies are now choosing to terminate.

To me, the knowledge that my child is disabled would clearly place pressure (maybe from family, friends, society) to terminate. And I don't want to feel "selfish" or guilty about choosing to keep the child and putting strain on my family. Or thinking later on either way that I made a bad choice, that it all fell to me. This is really my fear, the pressure to terminate as being the more "responsible" decision.

It is clear, at least to me, that you wouldn't want to abort, and although those tests can pick up other conditions besides DS, if abortion is not something you would consider and it is not important to you to "know in advance/be prepared", I would just skip the tests and do the old fashioned way and find out when the baby is born.

Personally, I did the test and would want to know well in advance since I would abort. But yeah, I agree that after the child is born it doens't make difference because he/she will be loved the same way.

[Anonymous]

I was 34 when I delivered DC. Had NT and Amnio. Everything looked great. I was certain that DC was going to be fine. Fast forward a few years and DC has major medical issues that were not detectable in testing. Testing does not show everything.

I have often thought, what would I have done if DC's condition showed up in testing? Would I have aborted? Loving DC and having DC here now...I can't even imagine it. But, truthfully I won't inflict the same thing on another child. I terminated a pregnancy a few months ago b/c I just couldn't do it to another living soul (and DC's condition is genetic and a certainty for siblings). It isn't just about how the parents are going to deal. The child is the one that has to live with a lifetime of tests, pain and problems. I can't even begin to explain how it feels to be a Mom and feel so helpless when your child is in pain and there is no end in sight.

So, I guess the point I'm trying to make is that you have to consider the child also in the decision. I'm not saying that all children with disabilities or challenges don't deserve to live. Just that each circumstance is unique and you never really know. Even with the testing.

[Anonymous]

I did nuchal translucency only with both pregnancies. Healthy baby delivered at age 37, then age 38. I had no interest in further testing since I knew I wanted to move forward no matter what.

[Anonymous]

i am 38 and declined all invasive testing

[Anonymous]

I was pregnant with my daughter at 37 and did not do any testing except cystic fibrosis. We had discussed it and decided that we would not want to terminate the pregnancy even if the news was bad. We were blessed with a beautiful, healthy baby girl.