We were offered a termination. No one ever said: “He’ll bring you joy every day” – #100days100stories

Guest post by Alexandra from Dunbar. Alex’s second child, one-year-old Benjamin, has very complex needs which were discovered before he was born. She writes a blog, and shares her story with us as part of Scope’s 100 Days, 100 Stories project.

We were 38 weeks into an uneventful pregnancy, excited about the prospect of meeting our second child.

Alex's son Benjamin at two days old
Benjamin at two days old

Then, at the end of a very long Friday, starting with a routine ultrasound at nine in the morning and ending with a hushed consultation eight hours later, we were informed that our baby’s brain had not developed beyond that of a 20-week foetus. It was way too small and simple. There were big holes in the middle and smooth surfaces where there should be intricate folds.

He may not breathe on his own, they said. He would probably need to be fed through a tube, would almost certainly suffer frequent and severe seizures, and would be very unlikely ever to walk or talk.

Benjamin in blue jumperWhile we weren’t pushed towards terminating the pregnancy, if we wanted to, the papers could be signed there and then.

We went home to think it over. We returned to the consultant again and again, we spoke to friends, relatives, counsellors, we scoured the internet.

A weekend turned into a week as we considered the implications for our baby – his likely suffering, his quality of life – for ourselves, and for our 21-month old daughter, Jackie.

I know it was the doctors’ responsibility to prepare us for the worst. But no one, no one, said: “There’s a chance he might be happy. There’s a chance you might still be able to do the things you wanted, just with a little more planning. There’s a chance he might enrich your lives in ways you never imagined.”

Our adorable son, Benjamin, is now one year old, and he has changed our lives for the better in so many ways.

Benjamin and his sister Jackie in Santa hats
Benjamin’s first Christmas with his sister Jackie

We haven’t yet missed out on anything we’d planned – we’ve been on trains, buses and family bike rides, bought a big old house on the coast, been abroad on holiday. My husband and I are closer than ever. I have learned that life is not so much about principles – it’s about caring.

We met some amazing people – mothers, fathers, grandparents, carers– fighting for their children, fighting to make their world a better place, sharing everything they have.

Benjy’s big sister loves him to bits, comforts him when he cries, plays with him whether he wants to or not! He’s the first thing she asks for when she wakes up in the morning.

Benjamin with his mum Alex
Benjamin today

Our son is a contented, even joyful, little boy and aside from his disabilities, he is healthy.

Yes, there are tough days. No one caring for any two children could truthfully say otherwise. Yes, we worry about the future – his and all of ours. Yes, it is early days yet – things may, and probably will, get harder.

But I firmly believe that Benjamin will continue to brighten our lives every day. He proves that there is another realm of possibility outside the grim, medical, worst case scenario.

Find out more about the 100 Days, 100 Stories project, and read the rest of the stories so far.

9 thoughts on “We were offered a termination. No one ever said: “He’ll bring you joy every day” – #100days100stories”

  1. That is such a lovely story. We have a daughter whose 23 with Cerabral Palsy and learning difficulties. She was diagnosed at a year old. She has an older and a younger brother, and she’s an Aunty.
    We were told she’d never walk or talk, have seizures etc, etc. she started to walk at at 11 and she talks for England. She has been through special needs schools, lived away at college for 3 years and now lives at the Lantern Community, Dorset and enjoys life to the full.
    Looking back, all the good things out way the bad things in life, she is a wonderful daughter, she’s happy has a great sense of humour and she makes us laugh and we would never change her.
    Take a day at a time with your children, especially the very special ones because time goes past so quickly.

  2. Awesome mommy you inspire me…I also have a similar story…but continue to have faith and love your beautiful baby boy

  3. Termination offered at 38 weeks, which is full term? There is something wrong with this story. People are not offered termination at 38 weeks.

  4. A parents love is not dependent on their child being “normal”, it is strong, and true through all of life’s challenges.

  5. My first thought was – This is a 38+ week old baby! How can they (the doctors) even talk about termination? This is a term infant! The word “terminate” doesn’t even apply! It doesn’t matter what stage of development his brain is. The rest of his body is term. Thank goodness his parents saw fit to give him life! God bless them!

  6. We’ve checked this with Alexandra, the author. She said: “38 weeks is correct. That is, two weeks before due date. Ben was born at 41 weeks. It is my understanding that abortion is legal up until birth in cases of severe disability. One reason our decision was so difficult was the pressure that I might go into labour at any moment and then the decision would be made for us.”

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