I was only 23 when i found out I was pregnant. I’d recently started working in my dream editorial job after university, living a great life working hard and partying harder.
I discovered I was expecting, unhappy in the relationship I was in at the time and absolutely confused as to what to do. After much soul-searching and counselling, I decided to keep the baby. Everything was fine in during pregnancy – no problems detected at all. So when at birth she was examined, with the paediatrician uttering ramblings of "I'm not quite sure what it is, but it will make a great chapter in my book", I began to worry.
Fast forward a few days, and we were given the news that my daughter most likely had a very rare syndrome called Rubinstein Taybi. It was nobody's fault – much like Down's syndrome, it is chromosomal and not hereditary or genetic.
My world fell apart. I was already facing life as a single mum (my choice at the time), but I suddenly had even less understanding of what was to come as a new young mum to a disabled child.
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People often asked if I'd known about her disability during pregnancy, although like many birth anomalies, it is actually undetectable during pregnancy (only very few syndromes are actually checked for). I always responded with the same answer: it wouldn't have changed a single thing. I believe that no matter what the odds, my daughter was meant to be here.
You go into a pregnancy to create a life. If you find out that life isn't going to be exactly as you saw it, exactly what you wanted - well, that's just life! That life isn't worth any less because it isn't 'perfect', and I completely stand with Heidi Crowter’s views.
The life of a disabled child shouldn't be treated any differently to the life of a neurotypical or able-bodied child. Why should it? If abortion after 24 weeks isn't acceptable for 'normal' babies, why should it be any different for a child like mine?
My daughter has faced many challenges in her life – hospital appointments, special education, and now as a newly 18 year-old, navigating the failing education and social care system, which has huge gaps in care for her age group. It isn't the children we need to fix or get rid of, it's attitudes and provisions that are not fit for purpose. The services that are available are few and far between, or provide only for outdated ideas of what young adult social care should look like.
The system and idealised, insta-worthy expectations are what need to be changed.
I'm not saying our life has been wonderful; it's been more tough than I could ever have imagined at times, but it's also been significantly richer. My life and the lives of those around us have been changed for the better thanks to my daughter.
And no matter what the law says, it's a crime to kill your unborn child based on ignorant attitudes and the quest for perfection.
