I have been following many of your blogs over the past few weeks, and feeling such empathy, understanding and relief at most of your thoughts and feelings, as they more than often mirror my own. And that is what I LOVE about this blog community – that it’s my little world where I’m understood and where my feelings are accepted without challenge or judgement.
These past few weeks have seen me transformed from “nervous ball of worry” to “cautiously optimistic and actually a little bit excited” as I am now in my 11th week, and approaching that much-coveted-12-week-mark. Don’t get me wrong – I’m not sat in some yoga pose, all chilled out and unflappable – that would require some kind of lobotomy! But, I’m definitely relaxing more.
This week has seen a different sort of dilemma, in the shape of Non-Invasive Prenatal Testing (NIPT). In the UK, on the NHS, the current provision is a blood test and Nuchal Translucency for Down’s Syndrome. This test carries a stupidly high false-positive rate of 5%. That means 1 in 20 women will be told their baby has a high risk of Down’s Syndrome, when they aren’t. This then leads to the prospect of unnecessary invasive investigations like amnio/CVS which carry with them a 1-2% of miscarriage. It also has a false negative rate of 15%, meaning more than 1 in 10 women will be told their baby is fine, when it is not. There is no testing for Edward’s/Patau’s, which, out of all the Trisomies, have the worse outcome, leading to miscarriage, stillbirth, or death shortly after birth.
I was blissfully unaware of NIPT, until a work colleague, who is a cardiology doctor, told me about Harmony which is far, far more accurate, and also looks at Trisomy 18 and 13 (Edwards and Patau’s). It’s available privately for £400 or so. Samples are sent to the US, and then returned within 10-14 days.
So I ummed and aahed about this.. Did I want to open this can of worms? It’s all very well if you are low risk for everything, but what happens if you are high risk? I would be far too apprehensive to have an amnio, and couldn’t bear the prospect of a termination, but then what is the point of the NIPT?? Was I just undertaking an investigation simply because it was available?
Also, having gone through IVF to get this wonderful, precious, pregnancy, is it fundamentally wrong to want to know if something is wrong, or do you just “accept what you’re given”? I remember, a year ago, a fertility nurse in my clinic telling me an IVF mother had gone through with a termination at 20 weeks, after discovering the baby had got a cleft palate on the 20 weeks scan. A CLEFT-FKING-PALATE, seriously! I remember thinking that this mother ought to have some kind of psyche intervention, but am I just as bad for wanting to “mess” with this pregnancy?
The opinions we’ve had from friends and family are SO varied. A few of my fellow IVFers didn’t accept any kind of screening with their pregnancies, having just been happy with whatever they got given, so to speak. My friends have seen both sides of the coin – that it would be advantageous to know that everything was low risk, and that if there was something wrong, that it would be better to know in first trimester than in the second or third, but that having a high-risk result could lead to all sorts of anxiety.
My mother-in-law begged me not to, and pleaded that I “left my little one alone”.
More importantly, my husband, who’s invested in 50% of this little bean, has supported the decision to press on. If our baby is high risk for Down’s, this doesn’t bother us so much, but allows us to be prepared for the health issues they’re likely to face, and how it is likely to impact our lives, too. If it is, God forbid, high risk for the other Trisomies, we face a dilemma – do we amnio or wait and see what happens, with the forewarning that we may lose our baby bean?
Yesterday, I sent that package off, for it to journey across the Pond. I just hope I don’t regret the decision to open Pandora’s box!
On a more positive note, our 12th week begins on Monday, and will be the first time my husband sees our little jelly bean, live on telly, complete with limbs and a face, since the “6-week-spotting-scare”, where jelly bean was more like a blob. He is like a kid before Christmas, and it is so lovely to see 🙂