Me and The Little Fire

… that is the question.

When you are pregnant in the UK, you get offered two routine scans during your pregnancy. These are an exciting opportunity to take a sneak peak at the tiny human growing inside of you, a moment which can bring you to tears. During the first scan, at 12 weeks, you will get asked a question. “Are we doing the combined screening today?”. How much did you think about your answer to this question?

Around 80% of women in the UK choose to have screening. Screening gives you your “chance” of having a child with one of three aneuploidies, Down’s Syndrome, Edward’s Syndrome and Patau’s Syndrome. If a woman receives a “high probability” score, they are offered Amniocentesis or CVS which is a diagnostic test which tells you definitively. Then you are given a choice. Do you want to continue the pregnancy?

90% of children prenatally diagnosed with Down’s Syndrome are aborted. Children prenatally diagnosed with Down’s Syndrome can be aborted to term.

You read that correctly. You can abort a baby because they have Down’s Syndrome up to 40 weeks gestation.

It’s not usually a question discussed in detail with the medical practitioners you meet. I certainly didn’t discuss this in depth with my midwives during either pregnancy. I knew it was to check for Down’s Syndrome, but I had no idea that it also was screening for Edward’s and Patau’s Syndromes. I made a decision not to screen during both pregnancies; I always thought if I had a baby with Down’s Syndrome that it wouldn’t change the outcome for me.

We should really talk about screening more though. It should be a discussion with midwives. It should be something we think about and consider carefully. The question of whether or not to screen becomes particularly pertinent now as the NHS is considering proposals to introduce non-invasive prenatal testing (NIPT) more broadly across the UK. This is currently only available on the NHS in Wales. This will give women a far more accurate probability of having a child with Down’s Syndrome, without the risks of miscarriage associated with amniocentesis or CVS. There is early evidence to suggest that women with a high probability following combined screening, who choose not to risk amniocentesis or CVS because of the risks of miscarriage, would choose to have the NIPT test. As a result of this, there could be an increase in the number of terminations for Down’s Syndrome, as less T21 pregnancies will “slip through the net”.

In 2017, Iceland hit the headlines when it was claimed that through a “successful” screening program, they had managed to “eradicate” Down’s Syndrome. Eradicate. Think about that word. We aren’t talking about curing a disease here, we’re talking about the systematic elimination of a type of a person. Prenatal eugenics.

We need to be talking about this more.

I have complicated emotions around screening. I did not choose to have screening, and back then it was very black and white. If I am lucky enough to have a third child, would I choose screening this time? The answer is yes. But not for the reason you might think. I wouldn’t choose screening because I would not choose to have another child like Aidan – He’s such a gorgeous baby, I’d have a whole troop of babies like him. I would choose to have screening, because I now know that there are some medical issues associated with Down’s Syndrome, which it was beneficial to know about before Aidan’s birth. Preparations were made, before he was born, which meant he was fit and well for surgery when he was four days old. I would choose to have screening, because now I know that babies with Down’s Syndrome can struggle during the third trimester and may require additional monitoring to make sure they make it into the world safe and sound. I would choose screening so that I could prepare.

When we had a growth scan at 34 weeks, we found out there was a high chance Aidan would have Down’s Syndrome. At this stage we chose to have the Harmony Test (one of the brands of NIPT tests available privately in the UK). Knowing that Aidan had Down’s Syndrome in advance allowed us to go through the motions before he was born, so we could truly enjoy his birth and early days, without the raw grief we felt when we first heard his diagnosis. I am so thankful that we found out in advance, so that we could separate those emotions and his birth was the happy, joyful time it rightfully should have been.

My emotions are complicated, because I cannot condone the direction screening is headed in the UK. I do not think Down’s Syndrome is a condition which warrants terminating a pregnancy. I have learned so much about Down’s Syndrome in such a short while. I realise now that people with Down’s Syndrome lead rich, fulfilling lives. I have already met so many new, interesting and inspiring people through the Down’s Syndrome community. In his short 14 weeks of life, Aidan has enriched my life in a way I could never have imagined before. It is not a life I would ever wish away.

When I found out Aidan’s diagnosis, I was petrified of what the future would hold.

Whilst struggling with these emotions, and trying to understand what this diagnosis would mean for us, I was offered an abortion no less than three times. I was told a whole list of medical problems Aidan could face. I heard words like “intrauterine death”, “congenital heart defects”, “duodenal atresia”, “intellectual disability”. I was told “the thing is with down’s children is they cannot live independently”.

I cannot stress enough that these were not the words of all the doctors and midwives who spoke to us during this time. Most people were incredibly kind and seemed to be glad we were continuing the pregnancy and excited to meet our baby boy. But not everyone has such a positive experience. If it was made scarier and harder for us by the very limited use of negative language we experienced, how much harder is it for others who have doctors and midwives who are not as sensitive?

Women are not being given the correct information to make an informed decision. There are websites and support groups out there who can give you the balanced view. But when you are experiencing anguish, resentment and a sense of loss for the baby you thought you were having, it is so very hard to find this all out for yourself.

So you see, I find the screening debate a very difficult one. I am not in a position to judge the choices that another family might make: I have no idea about their circumstances. What I do feel I am in a position to judge is the information women are given around screening choices and Down’s Syndrome. I judge the law which allows babies with Down’s Syndrome to be aborted to term. The medical practitioners we rely upon need to do a better job of communicating what screening means. There needs to be more education and awareness of what a Down’s Syndrome diagnosis means; it is not this great tragedy based on outdated stereotypes formed when routine institutionalisation was common practice.

We need to consider the ethical implications of screening. Why can you abort a child with Down’s Syndrome who has reached the age of viability (24 weeks)? Is Down’s Syndrome such a terrible thing? If you screen for Down’s Syndrome, should we also start prenatally screening for cystic fibrosis? Huntington’s Disease? Sickle Cell Anemia? Thalassemia? What about if someone has the BRCA 1 gene, which we know increases the chances of breast cancer? As a society, are we comfortable with prenatally deciding what type of a life is a life not worth living?

Resources

For anyone who wants more information around screening choices, I found the following resources very helpful;

• The Down’s Syndrome Association
• NHS Screening Guide
• Don’t Screen Us Out Campaign
• Positive About Down Syndrome