Tuesday, February 20, 2007

Nuchal Fold Testing

I've been chatting with another blogger parent, Catherine, about the new pre-natal testing that's being introduced across the board for all pregnant women in the USA and Canada. It's been used for all age groups in the UK for some time now so I am interested in the debate here. Interestingly, both Catherine and I sort of benefited from the tests - she had time to prepare for the birth of her baby and be positive about it, and Matthew and I had made the decision not to take the tests but were pleased that we'd had a discussion about Down Syndrome before Alfie was born. I believe that people are unlikely to terminate a pregnancy if they really understand what Down Syndrome means, but it's that knowledge that is so hard to share.
Anyway, here is our chat (slightly edited):

Dear Alice - thought you might like to see what has been going on in the
news down here re DS...
"Today NDSS issued the following press release and resolution related to the American College of Obstetricians and Gynecologists recent recommendations regarding prenatal testing for Down syndrome. This resolution was passed by the NDSS board of directors after extensive and thoughtful discussion. As you know, NDSS has actively engaged with the media on the topic of prenatal testing for years, and we have successfully secured quotes from constituents in many media outlets, including the New York Times, Wall Street Journal, CBS Early Show, NBC's Today Show and many others. We will continue to discuss this topic within NDSS and with other Down syndrome organizations, so that we can be a stronger voice for the Down syndrome community externally. And as we state in the press release, we will continue to engage with health care professionals, including ACOG and other organizations, on an ongoing basis to improve the information and resources that are provided to new and expectant parents. We welcome your thoughts and feedback."

Hi Catherine,
Thanks for that. I'm interested in this because in the UK everyone has the prenatal testing no matter what your age. It causes a lot of stress and unhappiness for people, but bizarrely, for us, it was sort of a good thing - it meant we thought about whether or not we would keep a child who had a 'chromosonal abnormality' and we decided that yes, we would love our children no matter what. We declined the tests because there was no point and we'd rather meet our children as people before we started thinking about their medical and genetic makeup.
If we hadn't had to think about Down Syndrome when I was pregnant, and if we hadn't made a positive decision that DS was an OK thing to have, it might have been harder for us when Alfie was born. I'm sure we would have come to the same outcome eventually, but as it was, we knew that we both felt Down Syndrome was OK.
I think it's crucial that people get to know more about DS, having our children in mainstream schools is a start, but really the medical staff who do the tests need lots of education. If the people who are treating you when you are pregnant and vulnerable are ill informed, it can hit you hard.
I'm glad the discussion is going on in the States and in Canada, even if it is unearthing quite a lot of bigotry. Right. I'm going on a bit now - think I might put something in my blog. Not sure yet.
Very best to you and your Fairleys

Hi Alice
Thanks for the message. I too am very interested in this issue!
Strangely enough we decided to get the "basic" test done and kept going as we got "abnormal" results until we finally had the amnio knowing that she was probably a Trisomy 21 baby. It was confirmed by the amnio. I just needed to know. Type A I guess. And medically, I wanted to have the safest birth for her - locally or at Univ of Maryland. In the end, all we needed was the
local hospital with a neonatalogist there. And I too felt I had a choice. Even though we would have had her either way, I felt like I got to choose to have her and it gave me a greater sense of
control over the future. I read, I researched....We prepared everyone, especially our two sons. In the end, I am so glad we knew. We were ready for her.
But that is the whole point, people should be allowed to choose what tests, and when and how, not dictated to by the government! I just want better education for the general public and the doctors too. The doc who did the amnio told us that 80% of all people with the DS diagnosis
choose to abort! Scary. He also told me to expect a daughter who would be 40 years old with a 6 year old mind. Asshole.
Got to run. Nice chatting!!
p.s. I had the nuchal fold test done. It came back 1 in 750 and a "DS positive" result, here, is 1 in 250..But to compare, my friend, with a typical child, had a normal reading of 1 in 10000. So that made us more nervous ( I had the AFP first and then the nuchal fold). So we went ahead and had the multi-dimensional ultra sound - they saw a normal heart but some calcium deposits which can be a sign of DS - so the 1 in 750 became a 1 in 250 according to the geneticist (the results had to be lowered threefold) and the AFP test (bloodwork) went from a 1 in 10 to a 1 in 3.3 chance, which made us decide to do the amnio.
Many people are not aware of the thresholds - again more information to be disseminated (another new friend had an AFP of 1 in 240 and thought they had less than a 1% chance of having a DS baby so pursued no further testing - they were devastated when their baby was born - she never knew that 250 or lower was a "positive" result). Many people here choose not to do amnio because they say there is a high risk of miscarriage (1 in 100). I have yet to hear of anyone ever having a miscarriage from amnio - do you know of anyone?

(... then the rest of our conversation is about punching a Dr Weiner - so I'll leave that to your imagination)...actually, I do know someone who very nearly lost her baby due to amnio, but the hospital carefully monitored them both and all was fine.


L. Noelle said...

Great post Alice! Something that never can be discussed enough! I agree that people can make informed decisions when given accurate, updated, factual information. Unfortunately, very often when it comes to DS the information is outdated, inaccurate and negative. This is what needs to change, because the prenatal tests are going to keep coming and coming!

Ali said...

Hi Alice,

Only just read this but wanted to comment to say that the test is by no means standard in the UK as far as I am aware.

Some areas don't offer it at all, some offer it for over 35s but you have to travel a long way, others only offer it for over 35s even if it's available locally. Certainly it seemed that plenty of worried people were ending up paying to have it done. And plenty of others were offered (and had) the triple test instead.

I guess the reason it's pretty much standard around here (SE London) might be because King's College developed it and are probably still doing lots of research, so want a large pool of people (which might also explain their off-hand manner when you refused it with Noah!).

Anyway, I'm sure it's becoming more and more standard, at least for 'older' mums, but the experience of UK-wide pregnancies on the birth boards I frequented in 2003 and late 2005 shows it to have been far from universal.

My point of view was closer to Catherine's I guess. We talked about it, decided that we would not terminate if our baby had DS but wanted to have a non-invasive test in order to feel informed. I don't know if I would have gone on to have an invasive test if my risk turned out to be high - we would have decided that at the time. But you know me - I like to know exactly where I am at all times if possible!

As far as losing babies due to amnio - I know one family member lost a lot of amniotic fluid and almost lost the baby (but was hospitalised and didn't), and another virtual friend who did suffer a miscarriage due to a botched amnio. So it does happen.

Sorry, very long! And very much after the fact!


Alice said...

I've thought a lot more about this since I posted this conversation. I really believe that parents should be given more balanced information, and more preparation when they are screened for Ds. In the Netherlands women are given 3 weeks before they have to make a decision about termination and in the meantime they are able to access balanced information that gives a realistic picture of life with a child who has Ds, rather than just scare stories of heart problems, etc. They also have counselling so that they can be sure they make the right decision for them and their families.

I think it's horrible that people are so rushed into making decisions here. What if you do something you can't change, and then you regret it? More balanced information and guidelines to doctors would be a start.