An Open Letter to Emmerdale

An Open Letter to Emmerdale (6th November 2020)

Yesterday I started to write a different post but then the day happened and instead of sharing that one I felt compelled to write something different. I will share the other one another time. 

You may well have seen the storyline spoiler for Emmerdale. Laurel and Jai are devastated to find out their baby has Down syndrome and decide to terminate their unborn child. Quite rightly the Down syndrome community are up in arms. From what we can gather the show only consulted Jane Fisher at ARC, a very biased individual and organisation that believes all children like Ava should be terminated.

I decided to write this blog post as a kind of open letter to the writers of Emmerdale, ITV and ARC.

The way you have decided to structure this storyline is not only offensive to people with Down syndrome and parents of people with Down syndrome but it undoes the work that the Down syndrome community work at tirelessly every single day. Day in and day out we battle, we battle against the outdated perceptions that too many people hold - society, medical professionals and as it seems, screenwriters. 

My daughter, Ava is 2 years old. Prior to May 2018, I was ignorant about Down syndrome, and yes probably even feared having a child with Down syndrome. I was fortunate in that I was unaware through pregnancy and so did not have to deal with fighting against medical professionals and their biased views in order to allow my baby to live. There are so many women and their partners who are not so fortunate. Is it any wonder that 90% of people terminate when the information given can often be so one-sided? You may have seen the #DownrightDiscrimination campaign, not only do 90% of women choose to terminate their child in the UK but they are able to do so right up until the baby is in the birth canal, up to 40 weeks. Your storyline hurts that campaign, it hurts your viewers that have Down syndrome or a family member with Down syndrome, it hurts any steps forwards in building an inclusive society where Down syndrome is not feared but understood and appreciated. 

Ava has changed our family for the better, she is an absolute inspiration, and she loves singing, playing and dancing like any other 2-year-old. Ava can communicate her needs to us through speech and sign, she makes people laugh with her quirky, cheeky sense of humour and she keeps us on our toes like any other two-year-old. She loves chocolate and sweets and doesn’t like bedtime in case she’s missing out. 

Eleanor, a blonde lady holding her newborn baby, Ava who has Down syndrome

How about this for your storyline as a more accurate portrayal but also supporting the work our community does …

Laurel and Jai discover their unborn baby has Down syndrome, and the medical professionals do their usual job of being ’sorry’, perhaps you even have that midwife or doctor who has read some leaflets from Positive About Down Syndrome and understands that there’s nothing to be sorry about. That makes Laurel and Jai think twice, they already know a child in the village with Down syndrome, things can’t be that bad, can they? They discuss the pros and cons they actually do some research rather than just listening to the outdated views. They discover that their child could live a fulfilled life, get married like Heidi, run their own business like Oliver and not only bring them so much joy but really impact the rest of the family and change them for the better.

Please reconsider this storyline and help support our work rather than push us back. 

For anyone who reads this, you may wish to …

Please help in working towards a kinder, inclusive society that understands and does not fear difference. This is where you can step up and make a difference.

Here are some photos of Ava's cheeky face to keep you smiling.

Feeling Sad and Angry

I am very aware how lucky we are with Ava, she is absolutely incredible. She is full of determination and brings so much joy to everyone she meets. When reading posts from support groups we are in, both Down's Syndrome specific groups and others for children with various additional needs, it is very apparent that some people are having a harder journey than us. Does that concern me? Possibly, I know that things could change at any point, but isn't that the case for any child? We never know what is around the corner.

Eleanor and Ava in bed laughing

Why have I decided to write this post today? I have read a few posts on Facebook today, some have made me cry with sadness others have made me frustrated and more determined to make the world a more understanding place for Ava.

I'll start with why I've been sitting here with tears in my eyes...

When Ava had her surgery we knew that there was a chance things might not go smoothly and there were various possible outcomes. We were lucky. Everything went the best possible way it could have done. I think in this day and age we assume that with modern medicine, despite all of the warnings, we just expect things will go well. But statistics have to come from somewhere. Two facebook posts today, which happened to be in my feed directly next to each other, from two separate places highlighted that things do not always go to plan and we shouldn't take anything for granted in life. The first post was about twin baby girls, one had been fortunate enough to have heart surgery and was going home, her sister, too poorly to even have the surgery, had sadly lost her battle. The second post was a little girl, 3 weeks post heart surgery. Things had not gone to plan, she is still fighting her battle and staying strong but with complications along the way that have affected her little personality. I'm not sure what I would have done in either of those situations and it just makes me want to squeeze Ava that bit more when I pick her up later, how lucky am I to have those smiles, laughs and 4am feeds.

Why am I frustrated?

I read about a family who are unable to fulfil their dream of living in New Zealand because their youngest daughter has Down's Syndrome, and she is seen as a burden to the country. Therefore being denied a visa, despite being otherwise healthy and her family able and willing to pay for any support in school that she requires. A second article is about a man who has passed away because he did not receive the care in hospital that he should have received.

Why are our children or families seen as second-class citizens in some people's eyes? Why are they any less worthy of having a life that they, and we, dream of? Why can't people open their eyes and see what they could learn from these amazing, courageous children and adults?

I wouldn't change a thing about Ava (I would maybe change that she had to go through the battle leading to her heart surgery ... but she won't remember that, so is it really that big a deal?!), however, I would definitely change how health professionals, governments and society in general view people with Down's Syndrome as well as other additional needs and disabilities. 

The 90% (6th July 2021)

I could easily have been one of the 90%, could you?

On Sunday I wrote a social media post about Ava, my youngest daughter, saying I would not have aborted her while pregnant if I had known then that she was going to have Down syndrome. I lied.

The truth is, knowing what I know now, I would not have aborted her. But the me back then? I didn’t know what I know now, I was naive and ill-informed about what having Down syndrome actually meant. I don’t know what choice I would have made. After all, it’s one of the things they test for in pregnancy so as far as I was concerned it must be a terrible thing to have, a burden on the entire family and quite possibly life-limiting. How wrong could I be?!

This week Heidi Crowter is bringing the government to court to change the law around abortion. Many people, myself included before this case, are or were unaware of the discriminatory law around abortion and babies. Children like Ava, who have Down syndrome, as well as those with certain other disabilities are not treated as equals amongst their peers during their mother’s pregnancy. 

Had I known prenatally that Ava would have Down syndrome I would very likely have been offered a termination, probably more than once if I had not taken it up on the first offering. I would have had this as an option, to end her life, right up until she was being born. With Maya and Oscar, I would not have had the option beyond 24 weeks. My children are all equal, they each have so much to offer, an immense amount to teach and each one brings us joy in their own individual way. Equal to us and all who know them, but not in law. 

It may not all be plain sailing with Ava, but it certainly isn’t with Maya and Oscar either! Each of them brings their own challenges and I wouldn’t want any of them to be any other way. 

Yes, we have a few hospital visits each year for Ava to check how she’s doing (brilliantly BTW!), she also had heart surgery at 4 months old and will likely require further surgery in the next couple of years. You know what though? At each cardiology appointment or hospital stay, we did not see another child with Down syndrome, we did however see many children whose parents would not have been offered a late termination because hearts are actually pretty fixable!

We’ve all learned Makaton to support Ava’s communication too, actually, it’s been pretty fun and who doesn’t love to learn a new skill?! The biggest pain in the backside though … is challenging outdated perceptions in society, by medical professionals and apparently the law. That’s the biggest burden. Without needing to open people’s eyes to what is possible, to the joy and to help them realise that children like Ava are not any more of a burden than anyone else, our lives would be a lot easier, Ava’s life will be a lot easier in years to come.  


So, why the 90%? 

Nine out of ten women who find out prenatally that their child will have Down syndrome decide to terminate their pregnancy, for some this is after 24 weeks. It's not uncommon to receive the diagnosis after this point and a termination is currently an option at that point. Yes, some make an informed choice knowing all there is to know. Many are only given limited information or the potential negatives, not a balanced view. The things that COULD be more difficult, but as with any child, we never know what anyone’s future has in store. Why try and predict Ava’s future any more than Maya or Oscar’s? Do you know what your child’s future holds with any certainty?

It pains me to think that our path could have been very different, I could not imagine not having Ava in our lives. She is a lively little 3-year-old, she loves Waffle the Wonder dog (yes we know all of the songs off by heart), Numberblocks (& those songs too!), eating chocolate and singing nursery rhymes. She brings joy to our lives on a daily basis, she’s taught us all to slow down and to value the small things. She’s my greatest teacher and inspiration.

This week I stand with Heidi and with Aidan and fully support them in their case to ensure our babies are #EquallyValued.