What are your partners feeling on testing/refusing testing?

[dashley111]

If YOU have chosen not to test, is your partner behind you?  Did your partner car either way?  Did you productively discuss pro and cons, or just both agree from the beginning? 

Me and my husband are having a bit of a disagreement about the testing I would normally have at 12 weeks.  I turned it down at my last appointment, without even thinking he would care.  When I told him (a week later) he DID care.  Even thought we both agree that no matter what the results were, we would never terminate the pregnancy- he feels that if on the off chance something was wrong, he would want to know to be able to prepare himself. 

I just don't feel that way.  I just want to relax, and not worry, and enjoy a pregnancy for the first time.  I don't want ANY testing I don't absolutely HAVE to have.

I feel like his opinion needs to be validated, since we are after all a partnership.  I don't want to shrug him off, pat him on the head, and there-there him (ok, I *do* want to do that, but I know I shouldn't).  But I don't want to just HAVE the test even though I'm opposed to it. 

[meesh933]

DH has an aunt who had every test in the book when she was pregnant. Baby looked perfect. When she was born, they found out she had Down syndrome, an accompanying heart defect, and no rectum. Ultrasound, quad screen, everything showed a healthy baby, and honestly, she's lucky to be alive. So it didn't take much to convince him that the testing was useless.

The thing with consenting to the tests, IMO, is that there is such a high risk of false positives. I knew that I would never consent to an amniocentesis to confirm the results (because of the miscarriage risk), so there is no sense in getting the test done and possibly stressing over the results for the next 6 months.

Also, you don't HAVE to have any tests. Unless my midwife and I see a pressing reason, I don't even have a 20 week anatomy ultrasound, or the glucose or GBS screenings that most practitioners will tell you are "required." Nothing is required. It's your body, your baby. The only other person who gets an opinion is your DH.

[Rachelette]

I had my Maternal Serum Screening & Nuchal Translucency/Nasal Bone Sonogram to assess risks for Down Syndrome, trisomy 13, and trisomy 18 yesterday, and my risk for Down Syndrome came back as 1 in 23.  I was completely blindsided by the results, because my midwife hadn't prepared me for the risk of a "bad" result because risk levels for someone like me (I am going to be 40 at delivery) are automatically higher and she didn't tell me about the rate of false positives.  Instead when I got the 1 in 23 number she said that she had never seen a false positive before and encouraged me to race to get the earliest appointment for a CVS.  I went in for the genetic counseling, and the woman was reassuring but its still bad enough that they are sliding me in today though they have no appointments for 3 weeks.  

I'm going to be 40 at delivery and I know that factors into it but the free beta-human chorionic gonadotropin (hCG) came back in the 95% and pregnancy associated plasma protein-A (PAPP-A) was in the 10th percentile, so although the nuchal transparency came back looking good and the technician found a nasal bone, that is what sent up the red flag.  And I feel like such an environment of fear and terror was created in me around this, that I am now going for a CVS with some risk of miscarriage, without thinking much about it. But the CVS is supposed to be diagnostic and be 99% accurate, so hopefully we will get good news and I can relax again. 

Honestly, I didn't research much because everyone told me it was so not a big deal and the risk numbers I was hearing were all in the 100s.  But now, given that I am older and given the high rate of false positives, I don't really think I would take this test again.  

[mama2mmj]

We have never had any testing done with any pregnancy. We decided that if the results were not good it would not change how we felt about the baby and abortion would never be an option. Plus the chance for false results is there either way and I wouldn't want to have the stress or worry during my pregnancy. DH is behind me 100% on this. We wont do any of the testing during pregnancy like GBS, glucose, 20 week anatomy scan.

[Abraisme]

My husband has always supported my choices regarding this.   I also refuse the GBS, glucose, etc, but I do get the 20 week ultrasound (only to find out the sex).   That being said, I don't have any risk factors for those things.  If I was at high risk, I'm sure this opinion would be different.

[erigeron]

DDCC--My husband was okay with me refusing most of the tests, but I didn't want an ultrasound and he really did. I had done some research so I told him to go do research and then discuss with me how he felt about what he'd found out and whether he still wanted to get it done. Mostly he lets me have things my way most of the time, so when he feels strongly about something I typically try to let him have his way if it's not a huge deal to me. If we'd both felt strongly in opposite directions about some procedure or other and been absolutely unable to reach a compromise, I probably would have pulled the "it's my body" card, but I didn't see the need for that in this situation. We both had some misgivings about the procedure but we did end up getting the ultrasound done because I decided to let him have his peace of mind like he wanted, but I think if I'd put my foot down and said no he would have grumbled and accepted it.

I dunno, I think you have to weigh how important it is to you to avoid the test, vs how important it is to him to have it done, and any inconvenience or risk involved, and if you can shrug it off and do it for his peace of mind, and all the various factors. There's no one right answer.

[Ablemec]

We're not doing any testing other than the 20 week scan.  My husband hadn't really looked into any of this before we got pregnant, and I'm an obsessive over-researcher, so he just generally goes along with what I say about these things.  And it's not just pregnancy related.  As a general rule I do more research and do it earlier, so he tends to just trust my judgment.  That said, it's not as if I just said "we're not doing the testing and that's that."  I explained to him that neither of our family histories shows any risk of anything, we're in our early 30s and I see no reason to do screening.  On top of that we wouldn't terminate for any reason.  And on top of that, we wouldn't do CVS or amnio if we got a screening "positive" because we wouldn't terminate and the risk to the pregnancy therefore isn't justified.  So my thinking was that it would be needless, for us, to get numbers that we can't entirely rely on and that we couldn't do anything about.  And he completely agreed.  Now, obviously, I had already made up my mind and was effectively "convincing" him that I was right, but he got my logic and thought it made sense and went along with it. 

The thing that really sold it for him was that, while he can look at numbers and see just the numbers, I would be likely to stress the entire pregnancy over a screening "positive" and so it's not worth.  It seems like maybe that's the hang up for your husband?  He doesn't see the harm in having more information?  If it's a matter of preparing, I'm not sure that really applies here.  Ladies, correct me if I'm wrong because this is my first, but it seems that except for in the extremely rare cases where a genetic defect means your baby can't even breath on its own, a baby is a baby.  All babies require everything from you all of the time.  So a baby with Down syndrome needs to be fed and changed and fussed over just as much as a baby without.  It's only when they start getting older that there are developmental differences.  Then again, I am just speculating here.

Good luck.  I hope you two can come to a meeting of the minds.

[Jaimee]

I am also an over-researcher and knew that the tests carried high false positive rates and that they would lead to a CVS or amnio, which I wouldn't want to get.  I wanted to decline the other tests, too- GTT and GBS, but I couldn't and stay with the midwives I was with- so that's a consideration as well.  Dh goes along with pretty much everything I decide regarding pregnancy/parenting.  If he disagrees, though, I just ask him to do his own research and present me with a convincing argument and we'll go from there.  That's how we worked out the circumcision debate. 

I think what it comes down to is "what would you do with the information?"  You say you would worry the entire pregnancy and he says he would get prepared?  Well, I would ask him to do some research of his own and find out if "preparing" during the pregnancy is actually beneficial in any way.  My SIL and BIL had this very discussion.  In the end, he agreed that it was better to wait than it was to worry the entirety of the pregnancy- preparing or not. And, if you are comfortable with it, you could offer a compromise of doing the 20 week sono, which has the added benefit of finding out the gender if that's something you guys wanted to do.

[willsmomm]

We've had bad experiences with testing before so hubby and I learned the hard way and now we do as little testing as possible. I think I was more into testing than hubby the first time around anyway and apparently I just needed to learn my lesson good. Is there anyone your husband could talk to who has had bad testing experiences? Maybe that would help.

[dashley111]

For my husband, I think finding out his family history made him realize that his side of the family does have a higher risk.  With our first we opted not to test, not knowing the family history- it was never even an issue.  Both of his parents were adopted.  We have since found out that he has 2 living relatives with Downs Syndrome, and his family does actually have a history of life-taking birth defects.  His grandmother lost 5 children between the 7th and 9th month of pregnancy due to birth/growth defects. 2 were at delivery.  Knowing this, I'm not completely opposed to considering the tests but I'm just not in the place where I feel I need to have them.  I was prepared to NOT undergo any testing I did not have to this pregnancy (and there are some tests I do need to have because of my history). 

Now, knowing those things, would it change the way some of you felt?  Because I'm so torn as to how it changes what I personally want- and Im not sure I'm being rational. 

I'm a very educated person.  I worked in the medical field for years, and I know a lot about these tests.  For me, its not a matter of research or being educated- I think its more that I had an idea as to how I was going to handle these things, and its just not quite working out that way.

I scheduled the appointment for the 12th.  I know I have the option, until then, to change my mind, cancel, and discuss it with DH more. 

[MsVyky]

No testing here this time. With DD based on her 20 week scan (they found soft markers) and my Quad screen results, my risk of down syndrome came back ridiculously high for being 25 years old. They also were worried that she had CF, so they pushed for amnio. I declined and also declined the torch test to see if I was a carrier of the CF gene. My husband isn't caucasian, so it's very unlikely that he'd be a carrier (both parents need to be a carrier of the gene for a child to be affected) it caused us so much pain, grief and heartache, so this time we have declined all genetic screening an I don't think we'll be doing an anatomy scan this time either.

[Lula's Mom]

Ash, I think for me in that situation, it would still come down to "What will I do with this information if they find something?" 

Losing 5 babies so late in pregnancy or at birth is just unimaginably horrible, and I would think that if his grandmother had had the option, she would have wanted an ultrasound to see that the baby was growing properly.  Do you know if this was a syndrome that all those babies had, something they can specifically test for?  Is it hereditary?  Or maybe it was something to do with her own anatomy. Maybe just doing a late US or two can set your mind at ease about your baby growing the way it should.

I don't think Down Syndrome is hereditary (mostly).  In my research I saw that there is a very rare type that can be passed down through generations.  So you know, the chance of your baby having Down Syndrome is very small, and then the hereditary type is just a tiny percentage of those cases.  I think you just have to discuss with your partner, what would you do if you found out the baby had it?  For us, we would not terminate for any reason, so it doesn't matter and I have never done testing. 

When I had my first child, a couple in my childbirth class had a baby with Down Syndrome, and had not known before the birth.  We all got together to meet the babies when they were about 2 months old, and I think some of us were nervous, felt sorry for them, etc.  When we saw them, it was obvious that she was just a beautiful baby, like all the rest of them, and they were just as thrilled and in love with her as we were with ours.  That stuck with me. If my baby has DS, it will be okay.

[Jaimee]

Originally Posted by Lula's Mom 

When I had my first child, a couple in my childbirth class had a baby with Down Syndrome, and had not known before the birth.  We all got together to meet the babies when they were about 2 months old, and I think some of us were nervous, felt sorry for them, etc.  When we saw them, it was obvious that she was just a beautiful baby, like all the rest of them, and they were just as thrilled and in love with her as we were with ours.  That stuck with me. If my baby has DS, it will be okay.

This got me to thinking... perhaps you could post in the Special Needs forum and ask if those that found out ahead of time that their child had a special need if it was beneficial to them- if they would do it that way again.  And alternatively ask those that did not know ahead of time if they would have preferred to know or if they were happy they did not know until the birth.  I wonder if knowing or not knowing detracts from or enhances bonding at birth because of what feelings are or are not already in place. 

[Lula's Mom]

I think that sounds like a good idea.

[dashley111]

Thanks for your input guys.  Jaimee, I really like your idea- I think Im going to PM a few moms, and ask a few local moms I know who had children with special needs from birth.  Real experiences should help us both make up our minds- I honestly feel like there is no better resource than people who have been through it, and can give you advice from their perspective.

[justamama]

My husband doesn't even get why we're going to the doctor at all, so he's fine with as little or as much testing as I choose to have.

[dashley111]

I tried to post this last night but after writing out a looong post i hit backspace and everything deleted :/

I loved your idea, Jaimee, and I did something along the lines of that- I privately messaged 5 moms, 2 local moms I know and 3 from MDC.  I was hoping what they said would help me with my case BUT instead I was surprised with the opposite.  So far I have heard back from 3.

The first mom refused all testing (had 20wk u/s), gave birth in a birth center and was horrified when her son ended up having a spinal/neural tube defect.  She said if she could go back in time, she would do the testing without a thought.  She thought she was having a healthy baby, and had her "dream" scenario, but instead felt disappointed and horrified when her son was born.  He ended up needing some surgeries and will forever have some problems.  She said knowing would not have changed the outcome of her pregnancy, it just would have helped her and her husband prepare for what was coming and not be so shell-shocked. 

The second mom had a child with downs syndrome.  She also said that regardless of the results she never would have terminated her pregnancy.  She also did not have the genetic testing.  She said she would also go back in time and do the testing, only because they worried so much once they realized their baby had Downs that it really took away from the first few months with her, and the mother ended up having a lot of guilt that led to PPD.

T one response I got on MDC I was asked not to share, but did take away a lot of feelings from...not swaying an opinion in either way, but still a powerful experience. 

SO that is what I have so far.  Not what I hoped to hear or show my husband, but I'm very glad the women opened up to me and shared experiences.  I have a lot to think about.

[Jaimee]

I'm glad you liked the idea, but sorry that it has actually affirmed the opposite view.  I have to admit I was very curious what you would find out.  Have you considered posting in the special needs forum to get a wider sampling?  I agree that personal experiences from people you know well are probably the most influential, but I'm sure there are some people on the other side of the issue that could present powerful experiences as well.  Thank you for keeping us updated!