No, I am not a medical practitioner, and so please do your research and speak to your doctors before making decisions, but I thought I would update everyone on what we learned from the genetics counsellor we met with on Thursday at CHEO.
IPS screening is not good for women with multiples. And it is even worse for women with multiples who are older. How do I know this? No one told me, but going into the testing, I, based on my age, ethnicity and history, was going to automatically get a bad result on this test! Might have been something I would want to know going into the testing, perhaps…?
So here’s what happened. I was prescribed the IPS screening. This entails an ultrasound, married with a blood test, around 11-13 weeks, followed up by another blood test later (4 weeks later) to screen for certain conditions such as Downs Syndrome, Spina Bifida etc. I took the test thinking “I just want another reason to know we can relax – I am sure the results will be good.” Bad idea.
So yeah. We were told that our screening revealed a ‘positive result’ and that each of our twins had a 1 in 250 chance of having Downs. Although my doctor did say that the test was not ideal for women pregnant with multiples, she did NOT say that the poor result on the test was likely DUE to the fact that we had twins!
This is what the counsellor revealed to us. First, the blood test? Thrown out and not used for our results. They are not able to accurately measure the protein they are looking for or determine how much each of the twin babies is generating, thus, they don’t consider it in the results (amusing, as I took an our off work to go get the bloodwork done). This also means that BECAUSE they didn’t have the information about the protein, they INCREASED the positive (bad) result on the test because they weren’t able to have this to factor into it, thus, they increased our odds that the babies have Downs.
Secondly, the counsellor told me that before I even went into the test, based on who I am (see the second paragraph), I already had a 1 in 140 chance of having babies with Downs! So, as she pointed out, this was also a factor that they used to give us a positive result.
Then….she showed us the only concrete information we had that gave us a true picture of how the babies were doing…she told us the results of the ultrasound measuring the nuchal translucency – which is a measure of the amount of fluid at the back of the neck. If there is too much (generally over 3.5mm), there could be a problem. Our results? Baby A – .9mm, and Baby B – 1mm. Better than average result.
We had nothing to worry about all along. A lot of stress for nothing, that could have been avoided with a little time and attention to providing us with the information we needed up front to understand what we were doing.
That said? We are so very, very relaxed and happy right now, you have no idea. It’s been a good week.
Anyone have interesting stories about their experience with IPS? Did I get anything wrong here? Have some better resources on IPS for other women to read in advance of taking the test? Please comment.