Emmerdale is running a story line where a couple decide to terminate a pregnancy when they receive a diagnosis of Down Syndrome. I don’t watch soaps, but I do have a daughter with Down Syndrome and I do find myself feeling motivated to comment on big issues that happen in our community. It might help. This is a big issue for people with Down Syndrome and a chance to talk about some of the more difficult issues that arise because of what most people think when they hear ‘Down Syndrome’.
It took me a while to be able to articulate anything. Sometimes it does. There is always a mad rush to respond to the story. I get that. Strike whilst the iron’s hot. But with a 3.5 month old and a four year old at home whose birthday we’ve just celebrated, I wanted to have time to think and reflect. No bad thing. I didn’t even know whether I wanted to put something out here, but I’m pulling together some pieces that will eventually be put up on a website that’s in development, with the main aim of supporting parents with young kids with Down Syndrome to navigate the ‘system’ so I thought I’d test out some writing. It’ll end up on there eventually.
Doing my job, I’ve learnt to see one issue from many view points. This means that I usually take a while to work out how I want to present what I feel about something, especially when it is controversial.
Whilst it might not be my decision (I don’t know for sure as I’ve not had to go there) I do understand why someone might decide to terminate a baby with a life limiting condition.That agonising decision doesn’t get talked about enough. So highlighting it on national TV is not a bad idea.
The problem for Emmerdale Production team is - Down Syndrome in itself is not a life limiting condition. It’s sad that they’ve chose this diagnosis as the basis for the storyline.
Since the story broke, I’ve read countless angry tweets, blogs fiercely criticising ARC, ITV and the production company responsible for the show and arguing that they are discriminating against people with Down Syndrome.
I may have some of those thoughts, but when it comes to articulate them strongly, I find that I can’t operate like that. Perhaps due to the fact I try and see things from every angle before taking a view.
For me, the key issue is that Down Syndrome is not a life limiting condition. If more people knew that (including, importantly, the clinicians who deal with screening and testing), discussions around termination would not be as much up for debate. Some people may decide they couldn’t give a child with any disability a life and may decide not to continue the pregnancy, but this decision should not be based on outdated understanding and information, as it currently appears to be.
At present, a baby with Down Syndrome could be terminated as late as 39 weeks. This issue is the subject of a court application. Heidi, a young woman with Down Syndrome, is going to be speaking about this on Wednesday on Woman’s Hour. Well worth a listen.
I’m part of Positive About Down Syndrome (PADS), and proudly so. Nicola Enoch, the founder of PADS and mum to Tom and Emily was asked to speak on Woman’s Hour this morning. She suggested people send their experiences by email ahead of the show.
I decided to do that and this is what I sent:
I have a 3.5 month old girl who has Down Syndrome. She is beautiful. Full of smiles and hitting her milestones just fine at present. She’s fit right in to our life and we wouldn’t have her any other way.
We were never troubled by her having Down Syndrome and I think I know why...
We had a high chance result following NIPT. We went for a consultant appointment to discuss having an amnio but chose not to as there was sufficient information for us to be certain from the NIPT and a scan. I’d miscarried twice and didn’t want to risk it again. We were offered termination, although not in so many words (we were, I think, asked about being sure that we wanted to keep the pregnancy as opposed to whether we wanted to terminate) but lots of emphasis was placed on having heart scans before 24 weeks, implying that if there was anything ‘wrong’ then we may want to think about whether to terminate. This was, I think (I hope), linked more to any significant health issues though, not just to the fact that she was likely to have Down Syndrome. Once I’d told the consultant we were very certain we wanted to keep our baby (which I had to confirm a couple of times and it got written into our report for that day that we’d confirmed this when discussed) they did stop asking. But it hung in the air until her cardiology scans came back clear.
We had testing because we wanted certainty about her having Down Syndrome. This was mainly so that we didn’t have any (well meaning and well intentioned) questions around slight percentage chance she might not or the possibility she might not playing around in anyone’s (not ours) minds in the run up to her birth. I didn’t want to repeatedly go through that conversation (I had to a few times: ‘she might not have it, right? There’s a chance she might not?’) because it implied that it would be a bad thing if she did, better if she didn’t have it. We wanted our girl to be who our girl was always going to be, and we’d look forward to getting to know her as she grew. I’m glad we did this and I think everyone around us was too.
We have always been positive and have always had positive support from our family and friends. I am absolutely certain I’ve always been positive because I know people who have Down Syndrome, socially and through work, and went to a school where kids with disabilities joined our classes. I’m a massive supporter of integration from an early age and a firm believer that if this was more common place in education, work and in the community then we wouldn’t have half the issues we are facing as a community right now and disability wouldn’t be anything to fear. People are just people, and we are all different anyway. This goes for all minority groups thought doesn’t it? And there is legislation (Equality Act) to promote the equal treatment of everyone without discrimination. It just doesn't happen in practice. Soaps and TV shows can help promote this message, and should, where they can.
For us, knowing for sure was more to assist us in avoiding the horrible discussion above, so we could be entirely positive with no worries or doubts when we shared our happy news with our friends and family. Knowing more certainly helped us prepare everyone around us and to gather resources we might want.
It is great that this issue is going to be discussed on TV, but the producers of Emmerdale have missed, wrongly in my view, a chance to take a step away from the status quo by coming down on the side of the decision that is made by 90% of women facing a prenatal diagnosis. I don’t know what the characters take into account when making the decision, but it would be a chance to challenge the antiquated and outdated perception of what it is like to live with Down Syndrome. By continuing with the story as it is, it promulgates the messaging that it is the done thing to terminate a perfectly healthy child just because they have Down Syndrome.
The other two issues I am sure you’ve had brought to your attention, but that trouble me greatly are 1) how would a viewer with Down Syndrome feel when watching this story line unfold in the way it does and 2) it is clear that there was a clear lack of wide consultation when researching this. Had the relevant groups supporting people with DS and their families, the producers would have found that life is brilliant, challenging, exciting, frightening and full of love. Exactly like raising any child... and worth every moment.
We’ve got to get the messaging right for expectant parents. Some women feel rushed into decisions about termination of a perfectly healthy child by family, supported by clinicians who know little of what it is to live with a person with DS. TV shows have a platform to help with this. They should use it, not reverse all the hard work the community has been doing for so many years.
I do urge you to listen to Nicola. 23 mins or so in... https://www.bbc.co.uk/programmes/m000p6dq?fbclid=IwAR3V37G94OeTZDSUsp109NTP4-Pd4X1R9vQN8Aa6PqAaZ3wNYlBQzT08UC4
I thought the interview was brilliant and I thanked Nicola as follows on our group:
‘Nicola Enoch you were brilliant. Thank you for representing our community so perfectly. You were well measured, calm and articulate but your passion and fire came through.
I’m sat here feeding Frida looking at her smiling up at me with so much love and adoration and I just can’t imagine a world without her.
‘We have to stop looking at what people can’t do, and rather look at what they can do’. This is the point I started crying. It is so important this starts to happen for everyone with disabilities (different abilities) of any type.
I hope this debate continues and the pressure remains high to spread our message! Life is not all that different 🥰 Life is good.’
During the interview, Jane Fisher, Director of ARC said she didn’t think that the relevant question was why so many pregnancies where the baby is diagnosed with Down Syndrome end in termination.
This misses the point. It is essential to know why so many women are making the very difficult decision to terminate. If it is because they fear the life they planned may be overwhelmingly different and challenging with a child with DS, this is based on outdated information. Information that the producers of Emmerdale don’t appear to have obtained before finalising the storyline.
So, the debate rattles on and Heidi has her turn to speak to Women’s Hour on Wednesday. I can’t wait.
It will be interesting to see if Emmerdale reverse the storyline. If they don’t, I hope they do deal with the issue as sensitively and as thoroughly as is claimed, although I’m not sure I can bring myself to watch a soap just to find out....