Declining tests?

[Susan Mac]

My husband has a balanced translocation - he has a rearrangement of some chromosomes - but it means that we have a high likelihood of having a baby with the wrong number of chromosomes.

If the baby has an unbalanced translocation (bits of genetic information missing) the most likely scenario is that we miscarry. So far we have miscarried four times, and have had one healthy boy. But it is possible to have a stillborn baby, or a child with intellectual or physical disabilities.

Because we have a heritable genetic disorder, we are offered prenatal testing i.e. Amnio or CVS.

HOWEVER, I'm 14 weeks pregnant now and have turned down all the tests because theoretically we wouldn't consider termination an option regardless of the outcome, and I don't want the temptation to do something that I disagree with. Whatever happens to this little life happens, and we are okay with that.

I told the obstetrician yesterday that I wasn't interested in a CVS or amnio, and he looked at me like I had two heads.

Has anyone else turned down testing despite their high risk?

Tell me about your experience and assure me that I'm not mad!

[Jender]

If its nothing they can treat then unless you would terminate, the testing is pointless. Are you having an anatomy scan?

[Susan Mac]

Yes, I'll have the anatomy scan. It's less invasive, and can check for things other than this specific genetic condition.

I'd almost rather not have any scans at all, but I like to include DH in my pregnancies because they are his babies too, and he wants to have the reassurance of the scans.

[Thermolicious]

If its nothing they can treat then unless you would terminate, the testing is pointless. Are you having an anatomy scan?
This is my train of thought too :yes:

[PurpleButterfly4]

One of my friends had 2 m/cs and they didn't have the tests with their 3rd & 4th children, and turned out to be 2 happy & healthy girls who are 17mt & 5mth. They said they would have the child regardless.

[Jender]

The thing about the anatomy scan is it can pick up stuff that can be dealt with during pregnancy or can be dealt with at birth, and its better to be prepared. Such as heart conditions, they can set up surgeries etc and outcomes can be improved...

Its your baby and your life - you make the decsiion that feels right to you. And good luck!

[1+1=5]

If its nothing they can treat then unless you would terminate, the testing is pointless. Are you having an anatomy scan?
:iagree::iagree::iagree:

do what ever scans you want and don't do the ones you don't want to do. Its all up to you in the end. They will explain what the consequences fo your choices are but in the end, you're the boss.

[trishalishous]

If its nothing they can treat then unless you would terminate, the testing is pointless.

we refused our tests (but they were done without our consent)

[boysrgr8]

My first son was born with Down Syndrome and I refused Amnio or any other invasive testing with my next baby. I had the morph scan and was fairly reassured that my second baby didn't have any noticeable abnormalities.
He was born a healthy bub!!

Good luck with your choice, it is a hard journey of uncertainties but well worth it IMO.

[letsbepositive]

If I was in your situation I would not do the test either.

I discussed this with my OB during my last m/c follow up and he completely supports me on that one.

Good luck with your decision.

LBP
xxx

[Lunar]

My first baby was born with Down syndrome also (:wave: boysrgreat) and I refused testing with my other 4 pregnancies. When I was pregnant with my second daughter (4th pregnancy) the Dr's at every hospital clinic app would look through my paper work over and over and some would demand to me why I refused testing! It was none of their business! It didn't matter if I had another baby with DS, two heads or green skin! The actual chance of me having another baby with ds was so so tiny. DS is not hereditary you see, but most Dr's don't know this. I had to explain myself to every different Dr I saw.
With my last baby, I saw a private OB/GYN and at my first app I said "Right, I'm pregnant and I don't want any test. So please don't ask me or refer me" She accepted it and it was never brought up again. My only suggestion would be that if your Dr isn't respecting your choices, find another one who will. The last thing you want is the care of your baby comprimised because of a disagreement in regards to the tesing and what your Dr 'thinks' you should do. I've seen it before (personally) and it's not worth the heart ache.

I want to wish you luck in your journey and all the best wishes for a happy, healthy pregnancy and glorious birth of your precious bundle.
:hugs:

[Ra Ra Superstar]

I had the NT test without knowing really what it was all about and that i was able to refuse it. I ended up with a 1:20 risk. I declined amnio as i wouldn't have terminated and went the rest of the pregnancy not knowing. I had a healthy bub 2 weeks ago without down syndrome so i have become one of the MANY people that ended up having a false positive. Oh and any future pregnancy i WILL be refusing testing it's more trouble than it's worth if you wouldn't terminate anyway

[Silverbaby]

HI

I know this is an old thread but I can really relate to this. I have balanced translocation and decided to have the testing. A lot of people talk about doing testing to see if the baby has DS but to be honest I did the testing to look for other chromosome disorders that would result in severe mental and physical disabilities.

I think if you believe you can handle this( dealing with a child who may not live beyond the early years and be in severe mental and physical pain) then I would refuse testing.

I think DS is the best case scenario- you can have a loving child who is capable of enjoying life ...I've google way too much and found out waaaayyyy too much information about all the other various chromosomal disorders.

I think it's good to prepare yourself for the outcome and to know what to expect rather than pretending a problem doesn't exist.

I know I'll probably upset people by posting this but I think that just because you test doesn't mean you will abort automatically. I know the specific disorder will matter very much to me

S