June 16, 2003
permalink To test or not to test?

As I sit here now at 24 weeks wondering why I haven't blogged for so long, I realise that my exhaustion over what to do about prenatal testing is part of what got me so burnt out and stopped me writing in the first place.

Before I conceived my first baby at age 35 after living with type one diabetes for 24 years, I really thought I would have 'every test in the book' done. I was so worried about abnormalities I might cause my baby due to my diabetes that I vaguely felt that if I picked up a major structural abnormality, I might terminate.** see below**

I thought it would be terrible to live with the constant guilt about what I'd caused another human being to have to live with if structural abnormalities did occur in my baby due to my diabetes. However, the idea of termination did not sit easily with me at all. And raised all sorts of ethical issues for me as to why then I was risking having a baby at all?

Although it is irrational, as Down Syndrome is not linked at all with type one diabetes in the mother, my fears about abnormalities carried over to this Nuchal Fold / Down Syndrome test situation as well. And although my 1:2030 result should have been very reassuring, it wasn't. Perhaps this is partly due to having other health issues in my life that are very rare (such as necrobiosis lipoidicus diabeticorum) or due to me meeting a women years ago who'd had a baby with Down Syndrome after tests showed that she would be extremely unlikely to. Who knows? But for one reason or another, I spent a lot of time wondering whether I should have an amniocentisis.

My partner and I talked a lot about it. The first thing I hadn't thought about was just how significant a loss by miscarriage caused by invasive testing would be for me. (1:200-300 risk factor for amnio-induced miscarriage) The diabetes routine in pregnancy, although I was doing quite well with it, was very tiring for me and I felt I could not just start it all again if we lost a baby through miscarriage. I figured I'd need a year off meticulous control to let my mind and fingers recover (!) and I'd made some job and lifestyle changes too (to allow me to slow down a bit and concentrate on looking after the diabetes) which I'd want change back to give me more career sanity before trying again. Being a year older I might not be able to conceive as easily or at all. Perhaps we would not even feel we could try again. And of course this doesn't even touch on how painful it would be to lose the baby through amnio-induced miscarriage.

My partner said "I'd rather have a baby with Down Syndrome than no baby." So we decided against invasive testing.

We were pretty content with our decision. However when my new obstetrician casually mentioned a couple of weeks later, 'and I see you didn't bother with an amnio", I started worrying again. She mentioned that quite a lot of genetic disorders other than Down Syndrome could be detected and my brain started to go wild again.

I couldn't stop thinking about it. Weighing up the probabilities until the 18 week morphology scan was finally due.

I thought a lot about potential structural abnormalities, realising that many of the abnormalities caused by diabetes (spinal, heart, kidneys etc) can not be picked up until 16-20 weeks.

I read everything I could on the web about the various tests, risks and abnormalities and I talked to medical professionals. It was surprisingly hard to find any real detail on what structural abnormalities are actually linked with diabetes, what it would mean for a child to live with varying degrees of these conditions, and how much the likelihood of them occuring increased with incremental rises in overall HbA1C,

Most importantly I found that my original thoughts of potential termination were at odds with the closeness and protectiveness I felt towards my baby.

I guess by the time the 18 week scan came around I felt there would have to be a very very major abnormality for me to consider a termination. And when I felt my baby's first kicks at 20 weeks I really did feel for any woman who had to or decided to go through a late termination.

18 week morphology scan

The 18 week morphology scan gave us an enormous sigh of relief. No abnormalities detected. I finally felt happy about our decision not to go ahead with invasive testing. And I felt now able to begin enjoying my pregnancy again.


**I realise that discussing termination is very sensitive and I don't want to upset anyone. I think so many views on this topic are sacred and to be respected. I also believe that even for women who believe in termination idealogically, actually doing it would probably be exceptionally emotionally difficult. For the sake of this discusseion and wider debate, I just felt it was important to share my own experiences and personal perspective in dealing with the issue.

amnio versus cvs
Talking with a friend about what she'd decided to do

Amnio versus CVS

I now think I understand why people choose the cvs (chorionic villus sampling) which has a higher risk for miscarriage over an amnio. CVS can be done as early as 11-13 weeks with a fairly quick result (risk for miscarriage of 1 in 100). Amnio is generally not done until 16 weeks (1 in 200-300 risk for miscarriage) and can take over 2 weeks to get the full results back. I imagined that having a termination at 12 weeks would be quite different physically from having a termination at say 18 weeks. (Although a genetic counsellor I spoke with during my second pregnancy said that in practice she had found that women experienced equal amounts of grief choosing a termination at both stages of their pregnancies)

I guess this is also why invasive testing is such a difficult issue for many older women or women who have taken a long time to conceive. The effort and stress of doing it all again. And the risk of declining fertility.... wow... I can't believe that I, a truly driven information seeker at times, am saying these words, but do we actually have too much information to contend with these days?

Talking with a friend about what she'd decided to do

The thing I found most beneficial in my desire for peace on the issue was talking to one friend, whose opinion I really valued, about what she'd decided to do. She was 36 when she had her first baby and 38 now with her second and she and her partner have a family history of disabilities on both sides.

Apart from the Nuchal she did not have any other tests for either pregnancy. Her first daughter's ratio for Down Syndrome was 1:1200 post nuchal. Her current baby's ratio post nuchal was 1:330 which she said was nearer to risk but still considered low risk. She said the rapid change in ratio was mostly due to her age.

She said she worked out with her partner that she had a higher chance of 1:100 of miscarriage from a CVS than of having a child with a disability (not to mention the ones they may develop later).

Said her decision about whether to test further or not was "a hard one". She thought she would have all of the tests this second time around but chose not to do anything despite being anxious. Said it was a personal battle. She had a friend who was high risk and chose not to do anything and had just had a healthy baby boy the previous weekend.

Anyhow... I guess at that stage for me, when I'd decided not to test further and was feeling anxious about it, it was just soooooo nice to hear that someone else had made the same decision. I actually pretty well stopped worrying about it at that point, but it was amazing just how stressed I was about the issue for weeks.

Once again I want to emphasise that these tests don't generally pick up the abnormailities linked with diabetes (apart from spina bifida) so it's really not until the 18-20 week scan that you have some decent idea about these things.

Posted by patton at June 16, 2003 11:10 AM
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