Incompatible with life
When the word ‘pregnant’ appeared on the stick of blue and white plastic in early July last year, I never thought that actually being pregnant could be quite so tough. Sure, I’d heard stories about horrendous morning sickness, haemorrhoids and pelvic girdle pain. I’d had friends who had suffered from hyperemesis gravidarum and polyhydramnios. While it was daunting, I was over the moon – it was our first child and we’d been trying for a little while. And truth be told, my main worries about the next 9 months were 100% superficial, centring on how my figure would change and the saggy skin I might be left with.
The first trimester went off (mostly) without a hitch as I diligently followed the strict pregnancy diet and tried not to hurl every time I thought about cheese.
We attended our 12-week scan and underwent the usual screening tests because that’s what you’re supposed to do. Never in a million years did I think those screening tests would come back with anything other than ‘you’re expecting a healthy baby’.
But they did, and I was completely blind-sided. The screening results, based on a blood test measuring hormone levels in the mother and nuchal translucency as shown on the scan of the foetus, showed that our baby had a 1 in 13 chance of having either Edwards or Patau Syndrome. Like Down’s Syndrome, these conditions are marked by an additional chromosome (18th or 13th respectively).
Our next step was for further blood tests – the Harmony test, which is only currently available privately in the UK. We anxiously waited out the next 4 days in the hope that this couldn’t possibly happen to us, but those hopes were quickly dashed as the obstetrician confirmed Edwards Syndrome. We were told that, owing to the nature of this Syndrome, only 1 in 10 babies reach full term and are born alive, and that most of them will sadly die within the first few hours or days.
The term we have heard repeatedly is ‘incompatible with life’. We were told that we had to decide whether or not to continue the pregnancy armed with this information, or terminate the pregnancy of a much-wanted and already much-loved child.
Not content with a 99% accuracy rate, we decided to undergo amniocentesis. We needed all the facts possible before we could even think about making such a life-changing decision. Sadly, the amniocentesis confirmed what we were already resigned to.
We were heartbroken, our world turned upside down, but we made the decision to continue with the pregnancy naturally. It was a choice we were presented with and a choice we made. I know that many quietly question our decision, and many others do decide to terminate their pregnancies armed with the facts of these conditions.
The reasons many parents decide to terminate vary and are all equally valid. A diagnosis of one of these conditions can be completely life-changing: how will you care for such a poorly child? Will you be able to care for them? How poorly would they be? How long would they live? How expensive would it be to care for them?
Our decision for not terminating is equally as valid. I know myself well enough to know that I would never have been able to forgive myself, and always would have wondered ‘what if’. I also keep thinking ‘what if this is my only chance to be a mother?’ But it’s truly been the hardest thing I’ve ever done in my life, and honestly, I don’t know whether I could ever put myself through it again.
But as I sit and write this, at 34 weeks pregnant with a little girl who will not stop kicking me, and happens to have Edwards Syndrome, I wonder why the medical community has not accepted my right to choose.
At every appointment with our initial obstetrician (we requested a new consultant at 28 weeks), he felt it appropriate to tell us ‘your baby is going to die’. This apparently stemmed from a concern that we didn’t understand what Edwards Syndrome is, because we weren’t reacting the way he expected us to (and possibly because it is so rare for anyone to continue the pregnancy with such a diagnosis). In addition, he seemed entirely reticent to provide us with the standard of care any pregnant woman in the UK has a right to receive – he’d clearly added us to the ‘not worth my time’ pile.
Unfortunately, we were met with a similar attitude from the neonatal consultant. The man who would be responsible for the care of my daughter once she is born (we still hope) informed me that a c-section would be a bad idea since she is going to die anyway and I’d be left with a scar (personally I’d rather not have a c-section, but that’s the choice I’m faced with if I want my daughter to be given any kind of chance at life).
Of course, should she be born alive, we don’t want to pursue any kind of active care that would cause her any pain or indignity, but despite all (Edwards) babies being so very unique and different in range of symptoms and needs, we’ve already been told that palliative care is the only option. That’s without even examining her; without holding her and taking the time to truly assess her condition.
The fact that we’re having to fight to even have a full post-birth assessment to inform a care plan I find utterly alarming and makes me think of various eugenics and social cleansing policies of the early 20th century. Up until the 1970s, children born with Down’s Syndrome were often placed into institutions and parents were often made to feel ashamed, being told to ‘Put him away and forget him’.
Despite this shift in attitudes that sees people with Down’s Syndrome live into their 60s and 70s because they are given the care and support they deserve, this shift is yet to reach Edwards and Patau Syndromes. For parents and children with these conditions stigma and prejudice still exists to the point where, as a parent, you are given a choice but are systematically judged for making a choice that others don’t see as the right one.
I continue to believe that all expectant parents should make that choice as they wish, but I also believe we need to have a wider conversation about support for those parents who, for whatever reason, decide to continue with a pregnancy in such circumstances. It is already a very lonely journey, and one that the medical community would do well to better support.
What is more painful than all though, is that I have to ask doctors not to refer to my daughter as ‘incompatible with life’. I have felt her move, kick and grow inside me. And however long she survives either inside me, or outside, she has had a life.
This blog was originally written in February 2019. Please note I am pro-choice when it comes to the topic of pregnancy termination.
For more information about Trisomy 18, the following support organisations offer advice and support for parents and families:
Antenatal Results and Choices: https://www.arc-uk.org/
SOFT UK: http://www.soft.org.uk
