What was it like to become the Mum of a baby with Down's syndrome 28 years ago?: A guest post by Sue Shields

After watching the powerful and life-changing play Up Down Boy by Sue Shields and her son Nathan who has Down's syndrome, Sue and I got chatting online. I tentatively asked her if she would consider writing a guest post for us, after hearing that her midwife blamed Nathan's extra chromosome on the fact that she had 'eaten mushrooms' during her pregnancy! Some medical professionals still need training about our children, but we have certainly come a long way from that kind of nonsense thankfully. To my delight Sue said yes! Read her story, her beautiful poem to her baby son and the incredible tale of how the play came to be:

Our Son was born on the 21st of February 1985. 

On the 22nd of February we were told that he had Down's Syndrome.

Needless to say really but we were both devastated at this news, neither myself or my husband knew the first thing about this condition and we both felt at a complete and utter loss and totally alone. We came home that day with our Son and we were just about to enter what would become for me the longest and blackest two weeks of my so far entire life. The bottom had dropped out of my World, the very floor had disappeared from under my feet, we neither of us knew how we would cope or what the future had in store for us. 

That first night at home for me was a long one, sleep was avoiding me, so I eventually gave up and went out into our living room, sat at the dinning room table with my coffee and let all of these unwanted and frightening random thoughts enter my head. It was that night I wrote the poem, Nathan's Poem, that follows:

Today a miracle's taken place.

And when I look into your beautiful face.

I find it so very hard to believe.
You are not the same as the others I see.

Something inside, it can't be seen.

It's left you different, it would seem.

There is a fold, a crease, a line.
And so many thoughts running through my mind.

But as I watch you grow from babe to man.

I pray that you will understand.

It's not this difference that I see.
Just all the love you give to me.

So now my Son, take my hand.

Together we'll begin life's journey on this land.

For you to me, are like no other.
Nathan, always I shall be proud that I'm your Mother.

After this night I would never write anything again for twenty five years. 

Sue and Nathan
Of course by now we were long over this very dark two week period, that we had so long ago shared....Thankfully. Time had passed and life had moved on with it's up and downs, technology had also moved on and I was now one of millions who owned a mobile phone and I greatly enjoyed sending text messages,none more so than to Hilary. Now had I been asked what Hilary did with these messages back then, I would have replied "Well she deletes them I suppose" and I would have been so far off the mark, because unbeknown to me she was typing them up and sharing them with Heather and Catherine (of Mamma Mia fame) and between them they saw something I could never of visualised or indeed believed possible. They saw a story waiting to be told of a child who just happens to have Downs Syndrome. 

The idea seemed to me to be incredulous and the fact that they wanted me to write it seemed even more so, but I went along with the idea, though secretly I was thinking all three of them most be completely mad! But from this, Up Down Boy grew and three years ago the show got it's first airing, I was not and could never of been prepared for the response this brought and indeed since, the success of the play. I never cease to be amazed at the feedback we receive and sitting in the audience, which I do most times when Up Down Boy is on I find to be an incredibly moving experience, when I see first hand the effect this story has on some of the people sat there watching it puts me in a very strange place and I always feel so guilty for making some people dissolve into tears! 

On a personal note, for me it's been the most wonderful opportunity to give something very special back to our very special son. He is never happier than when he is on stage performing and to see him on stage doing what he loves most and if by doing so he is maybe giving inspiration and perhaps hope to others, then it's a job well done.

And to anyone reading this now, If you are in that place where we were 28 years ago, all I can say is, in that first two weeks we both asked so many times "Why us. Why him" twenty eight years down the line we still don't know why, but what I can now say is. "We're glad it was" for to be without him is unthinkable, had we missed out on what he brought with him, we would not be the family we are today and without the bad times how could we ever begin to appreciate the good ones ?



  1. Sue, what a wonderful story! You must be so proud of all that you and Nathan have achieved. How fantastic that your son grew up to be an actor and tread the boards. I've heard such ravings about the play, I hope one day I will get to see it.

    All the best to both of you. xx

  2. So much of your story touched a piece of my heart that I had closed down Sue. I had a baby girl called Arran, she was born 14-7-1976.....she would now be 37.......she had many complications, and only survived 12 days.....she was tthe most beautiful baby.

    It's still to painful to talk about the experiences that followed her birth....suffice to say the world was a very different place then and attitudes to children not seen as "normal" were disappointing to say the least! !! Perhaps one day I will be able to tell my story.... Well done to you both for allowing your story to be told...I hope one day to get the opportunity to see your play...

  3. Dear Anonymous.
    Reading your comment touched me so much that I know my reply is going to be indeed very inadequate, I could never begin to imagine what you have gone through and still go through after 37 years. Nathan's eldest brother Adam was born just six days before your beautiful little girl and I cannot begin to comprehend having had to keep him locked away in my heart for all those years.
    Like you say, back then attitudes to anyone who was deemed less than perfect were not good, indeed they had not changed much by the time Nathan arrived in 1985, thankfully by now, albeit slowly attitudes are changing for the better.
    I do hope one day soon you will find yourself being able to open this very special place in your heart where you keep Arran so safe,and that you can then speak about her freely, I think by doing so would bring you much comfort.
    My thoughts and heart go out to you.
    Sue x


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