Tannice Hemming thought she knew exactly how she felt about pre-natal testing – in theory. That’s until her 12 week scan revealed something completely unexpected.
This was my third baby. We were excited, but somewhat blasé about the 12 week scan this time, not knowing my husband would never again be allowed to ultrasounds due to the pandemic. We couldn’t get childcare for our first two children, so he didn’t attend. He’d been to the 10 week scan we’d had – as the midwife didn’t trust my assertion that the baby wasn’t as far along as my last period indicated. This baby, we were sure, was a post-exit-poll depression baby. December 12. One of Boris Johnson’s babies, almost. What’s one more? As the results of his ‘stonking majority’ had come in, we resolved to cheer ourselves up.
Having decided back in 2014, before I was even pregnant, my personal view of pre-natal testing with respect to potential pre-natal tests for Autism, we resolved that I would not consent to it. My reasoning being that, given I’d not terminate unless a baby was likely to endure suffering by being born, there was little point in finding out any genetic issues, like trisomy 21, most commonly known as Down’s Syndrome. We decided there was no way I’d have an amniocentesis, a procedure that involves inserting a long needle into the womb and withdrawing amniotic fluid to sequence and look for chromosomal issues. That procedure carries a (small) risk of miscarriage: one I didn’t want to take.
Discovering something’s wrong
What I didn’t expect was that my view on all this would ever be tested. When I went alone to my 12 week scan, for the third time I decided that no, I didn’t want to be tested nor did I want the nuchal fold measurement offered to all expectant parents. Once in the scan room, however, things changed.
The Sonographer was very thorough & took a more detailed view of the baby than I’d ever had before at my 12w scans in 2015 and 2017. After the scan I was invited into another room and that’s when I knew something was weird. It was there I got my husband on speakerphone and started googling ‘tricuspid regurgitation’, a heart condition that is sometimes known as a “soft marker” for Down’s Syndrome. After speaking to my husband, at home with our first two kids, and the midwives, I decided that I would have my bloods tested. I never expected them to come back so quickly and reveal that I was high chance for Down’s Syndrome. Not in a million years.
Getting support – I was lucky
Given that I wanted to have a home birth (read more about that here), I knew that if my baby did have a heart condition and Down’s Syndrome, it would likely be a bad idea. I needed to know what was going on for sure and I was lucky that the hospital offered the Harmony test (Non-Invasive Prenatal Testing, or NIPT). It’s a blood test – taking blood from the mother means that tiny fragments of the DNA of the baby can be sequenced and then you can have a result with a certainty of around 99% either way with trisomy 21, trisomy 18 (Edward’s Syndrome) and trisomy 13 (Patau’s Syndrome).
The next 12 days were quite fraught. I thought I knew how I’d feel but in reality it was not as simple as I’d thought it would be. I already had two children – what would a positive result for Down’s Syndrome mean for them?
Luckily I had two kind women with whom I could discuss what life with Down’s Syndrome was like. Kelly Taylor, 40 and Melissa Lockwood, 42. I knew both of them from a supportive Facebook group for mothers who like to wear their children in slings.
Kelly underwent prenatal testing, just as I had, and found out her son, Beau, who is now 3, had Down’s Syndrome before he was born. Melissa found out that Francesca, who is now 6, had Down’s Syndrome when she was born.
I first discovered that Emmerdale was running a storyline on exactly the dilemma we may have faced in March when Melissa wrote an open letter to the soap’s storywriters a few days ago.
Characters Laurel Thomas and Jai Sharma are due to undergo prenatal testing and make the difficult decision to terminate their baby once they discover the baby has Down’s Syndrome. This outcome is very common – around 97% of pregnancies where the baby is diagnosed as having Down’s Syndrome result in termination. This statistic was one that was examined in detail by Sally Phillips in her documentary “A world without Down’s Syndrome?” in 2016.
Her moving documentary featured an interview with Jane Fisher, the director of Antenatal Results and Choices, a UK Charity which says it is “the only national charity helping parents and healthcare professionals through antenatal screening and its consequences.”
Antenatal results – understanding choices
However, according to Melissa, ARC is a charity which isn’t truly interested in those who wish to continue their pregnancies. The history on the charity’s own page reveals that it was initially created to support those who wish to terminate their pregnancy when genetic differences are found.
Both Kelly and Melissa are pro-choice; neither of them believe that families should be prevented from taking the decision to have a termination for medical reasons, but they do think that attitudes are archaic and that the advice given is usually not as up to date as it should and could be.
The interview that Sally Phillips conducts with Jane Fisher in the aforementioned documentary is revealing in content. When Sally posits the notion of a woman asking for advice about the extent of disability her baby might face, the immediate solution that Jane presents is termination. Given that the charity was initially called Support After Termination For Abnormality (SATFA) in 1988, it’s clear that the original remit was only for those who wanted to terminate. That’s the main issue that both Melissa and Kelly focus on when it comes to Emmerdale’s upcoming storyline.
ARC’s nondirective support ‘we’re not going 2 say, you’ll be able 2 cope We say, well how worried are you? Do you feel you could continue this pregnancy & deal with that? Can you deal with that level of uncertainty or do you feel you need 2 end the pregnancy?’#womendeservebetter https://t.co/PObiR7LHkx pic.twitter.com/ZodjCgBYKb— PositiveAboutDS (@PositiveaboutDS) November 6, 2020
Seeking support from ARC – an alternate view
Amy Taylor, another friend with experience of baby loss due to medical reasons has an alternative view of ARC, however. Hers isn’t specific to DS, but she told me that it is “impossible to understand the many conflicting and horrific emotions experienced by a parent who finds themselves in the position of contemplating a decision about continuing a pregnancy due to the results of a scan or other ante natal test. ARC were amazing in the support that they gave my husband and me – and I wouldn’t hesitate to recommend them. I have never seen them “peddling” any biased views. They were incredibly impartial and factual in the information they gave me.”
Amy and her husband had to make some difficult decisions about termination for medical reasons – a distinction she says is key in the “baby loss” community. Her baby had a Cytomegalovirus infection (CMV) and sadly died before she was able to make a decision about which way to turn in terms of a medical or surgical intervention.
Her experience was traumatic and the NHS was sadly not as able to help them with all the associated information and support they required with each of their pregnancies. Amy says that “ARC provide an absolutely invaluable service and gap in the provision a massively overstretched NHS can provide”
Outdated information and archaic attitudes
Kelly, who lives in Worcestershire, already had a son when she got the news that her bloods showed her pregnancy was high chance for Down’s Syndrome. At the time of that initial indication that her child might have trisomy 21, she didn’t know where to turn for support and wanted to get advice from the medical profession about what to expect. Sadly, however, all the information she received, she says, was based on outdated information.
Both women are clear in their support for anyone who decides they can’t continue with a pregnancy. After all, there is no point forcing parents to have a child they feel ill-equipped to care for. But they both are clear that Down’s Syndrome is far from a life-limiting condition. Francesca, 6, is full of life and in most ways, no different from any other little girl. She’s a mini model and has been photographed modelling for Primark, Mothercare and Tomato glasses. She likes to “play at the park, ride [her] bike, go roller skating and so much more.” Her mum says her “life is not limited – [society’s] attitude to my life is the problem”.
A parent’s fears – examined
Kelly says that she spent the whole time she was waiting for the results of the NIPT (non-invasive prenatal testing) thinking and considering what to do but did not make a final decision until after the 20 week anomaly scan, which showed nothing of any concern. It was at that point that her partner pointed out that, at 21 weeks’ gestation, it would likely cause her more stress to terminate than it would to continue with the pregnancy. She was faced with confronting her fears. “What was I scared about?” she asked herself. She realised that her fears for her unborn son were really no different than the fears she faced when pregnant with her first child. She wanted her children to be included and accepted – to be loved and to love and to have meaningful life experiences. Sadly, for those with Down’s Syndrome, so many do not value their lives. The termination rate is something that both women find very hard to realise with their own experience of Down’s Syndrome. The difference between their children is that the ones without DS are not judged as lesser. They both have concerns that this storyline will continue to mean that those with trisomy 21 are seen in a negative light, when the reality is so much brighter in 2020, than it was in years gone by.
What about the adult DS community?
October is Down’s Syndrome awareness month and it didn’t escape Kelly’s notice that this storyline comes just a month later. She says that Beau has taught her things about herself she didn’t know and that he is funny, welcoming and resilient. She struggled to find accurate, impartial and informative information about what Down’s Syndrome can mean. She feels that the Emmerdale storyline could have been a real positive force for change. Instead of portraying the typical story of a couple finding out about Down’s Syndrome and then terminating, she says there are two possible outcomes that could have been shown. Perhaps, she suggested, the couple could have been shown receiving the archaic attitudes so many face, contrasted with a positive meeting with a medical professional who gives them information that it isn’t all doom and gloom. She’s concerned that soaps have a responsibility to the existing community of people with Down’s Syndrome and that it’s just another way that society makes children and adults like Beau and Francesca feel less. She doesn’t want her son to grow up in a world where people think that anyone with DS is lesser – that disability is the last acceptable discrimination and prenatal testing means that we may eventually live in a world where people like Beau and Francesca no longer exist.
Late termination – up to birth, even
Melissa feels similarly about the Emmerdale storyline and suggests that it could have been handled in a better way. She suggests that late termination would have been a better storyline and would have engaged the wider audience more than a storyline that really only affects the very small community of people with DS and their families. It’s possible to terminate a baby with DS at any point in pregnancy – right up to birth – and indeed she knows women who have been offered termination when they go in to hospital to be induced, even. She says it’s wrong that the first and only thing you’re offered when you discover DS during pregnancy, is termination. The alternative storyline she suggests is that another condition could have been explored – like trisomy 13 or 18 – which would have affected a far smaller community of people. Sadly, few children born with Edward’s or Patau’s make it to birth and the few babies who do survive pregnancy and birth never make it to their 5th birthday.
The other concern both women brought up was that this storyline will affect many adults with DS who have the capacity to understand. Coronation Street has an adult actor with DS (Liam Bairstow, since 2015) who has, so far, been silent on the issue. Emmerdale already has an actor with DS – young Leo Goskirk, currently played by Harvey Rogerson. What about his feelings?
Did Emmerdale do enough research?
Melissa has written an open letter to Emmerdale in which she details her concerns and talks passionately about her daughter, Francesca.
She says Emmerdale failed to speak “to any parents who have chosen to continue a pregnancy, parents who have children with Down Syndrome or indeed any of the major charities that support parents and people with Down Syndrome such as the Down Syndrome Association or Positive About Down Syndrome.”
Emmerdale have responded to their critics and they say that the storyline is “a balancing act to make sure all voices are heard and that is what we have done with this one”. They point to the fact that they have a young actor with DS in their cast and that the storyline will show his parents, Rhona and Marlon, talking to the the couple wanting to terminate “about the happiness Leo brings them and how they wouldn’t change a thing about him and are glad they made the decision to continue their pregnancy”.
They point out that they are concerned about how many parents who have decided to terminate “felt unable to talk about what they had gone through, for fear of being shamed” and that “this isn’t a story about what is right or wrong, it’s a story about a person’s right to choose without judgement, but instead support from their family and friends”.
Support for the minority?
The problem is, it seems, from the experience of Kelly, myself and others who have decided to continue with a pregnancy, (as those who decide to terminate are in the majority), there isn’t a great deal of support for the minority of people who feel they do want to continue.
When I was waiting for the results of my Harmony test, I had to face the idea that I would be judged for continuing my pregnancy. I felt lucky that my husband felt the same as me. That whatever our future son had in terms of chromosomes, he was our son and he was the brother of our two existing children. I felt lucky to know both Kelly and Melissa and find out from them what DS can mean. I felt lucky to have found Nicola and her campaign, Positive about Down’s Syndrome. I also discovered various instagram accounts of parents who had children with DS and felt passionately that I would want to continue. Sadly, friends and family still had archaic attitudes about what DS meant and I steeled myself for continued judgement – especially since I had two children already.
The outcome for me was simpler than for many who undergo prenatal testing and in the end we discovered that our baby did not have Down’s Syndrome. My principles and attitude towards the diagnosis was never fully tested and my baby was born on 11 September 2020. However, I still feel very strongly and have at least walked some of the path that many others have struggled down and made a choice about which way to turn after diagnosis.
Where to turn if you’re unsure
If you’re in that position, to be clear, I don’t envy you. I support your choice, whichever path you do take. I just urge your decision, like all decisions we make, to be an informed one. Not one based on a worse case scenario, or outdated views on what DS means. No one is pretending that caring for a child with DS is always peachy – it can come with associated health issues which are hard for anyone to deal with (let alone the person who is affected by them). However, DS is no longer “life-limiting” – we can see that by the increased visibility in media of people with DS. We can see that people with DS can have, to quote Kelly “meaningful occupation”; hobbies, jobs, marriages and an impact on their friends and family – and even society itself.
For more information on what DS can mean for a person, you cannot go far wrong by visiting Positive about Down Syndrome and taking a look at their new book Nobody Told Me. I am pleased to own a copy and am happily supporting their campaign to have a copy available to parents in every hospital. No one wants anyone to continue a pregnancy they don’t want. But we should carefully examine the fact that a pregnancy can be terminated up to the point of birth if the baby has a diagnosis of DS. We should carefully examine the fact that so many pregnancies of babies with DS end in termination. We should carefully examine what these storylines and attitudes mean for society – and for those people who are living their lives knowing that a huge percentage of people think they shouldn’t be here.
Let’s think differently – and accurately – about Down’s Syndrome. Let’s do better. It matters. They matter.
Resources and further information
Crowd Justice campaign: Downright discrimination: stop the govt singling out disabled babies (campaign to stop late termination of babies with DS)