The A-word

I started off writing this as a comment on Long Term IVF’s very thoughtful post about PGD (pre-implantation genetic diagnosis – basically genetic screening of embryos) – but then decided to turn it into a post of my own, as this is something I have given a lot of thought to.

She asks:

If you knew your child might only have 18 years of life, would you decide against giving them life?

… and concludes, very fairly, that no, she wouldn’t. She would give birth to that child.

For us, we would rather take that risk, rather than never have children or never try… I don’t want to play God.

Admittedly, I haven’t put a lot of thought into life-or-death situations like that – but I have thought a lot about playing God.

Because of J’s translocation, we have a massively increased risk of either miscarriage or conceiving a child with Down’s Syndrome.

Before we decided to go down the PGD route, J and I had already decided what would happen if we conceived a child with DS. My brother and step sister have severe autism, and J’s cousin has DS, so we have both seen first hand how hard it is to bring up a child with learning disabilities.

We disagree on a lot of things – but one thing we didn’t really even need to discuss was that we would terminate a pregnancy if we found out our baby had DS.

I know, considering all the shit we have gone through, that it sounds like a crazy thing to say. But watching my brother and step sister and J’s cousin grow up into a world that doesn’t always want to make a place for them has been fraught with anguish for both our families.

As J’s mother keeps saying, his cousin has brought “so much joy into the world”.

But equally, none of them can get proper jobs, they all need round-the-clock care and getting any kind of provision for them (care, housing, a frickin job) involves a giant battle with local councils, which has become harder each time as the government cuts services. Once my parents are gone, it will be left up to my sister and me to care for my brother and step sister, which of course we will execute with a heady mixture of devotion and impatience.

Half the fight for most families is simply trying to create a purpose for them. Did you know only 17.5 per cent of learning disabled people have a job in the UK? That’s 1.3m people, many of whom are perfectly able-bodied, who desperately want to contribute to society, but can’t because most workplaces aren’t geared up to help them.

What’s heartbreaking is that my brother, my stepsister and J’s cousin all know the world they live in wasn’t made for them. They are all perfectly aware they’re not getting out of life what others do. They all know no 20-something hangs out with their parents as much as they do. They just want to go to work, hang out with their friends and fall in love, like everyone else does. But the world they exist in finds it hard let them do that.

Of course, this is a highly personal decision for everyone who makes it. Luckily for us, the PGD should mean it’s a choice we don’t have to make.

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2 thoughts on “The A-word”

  1. I totally support your decision. It’s awful how badly people with learning difficulties are treated. Both my sisters are on the Autistic spectrum. My older sister is in full time work (she’s high functioning so an office typing job is manageable – so long as she doesn’t have to do relationship work). My younger sister (half sister) has Pervasive Development Disorder as well (which could be linked to NF1 perhaps). I spoke to my mum about our decision not to do PGD and she told me her thoughts. She is my little sister’s full time carer and my sister has virtually no contact with the outside world. She has no job and no social life and virtually no friends. It’s a minefield. She’s deeply unhappy. My mum says that if she could have had PGD she would have and she would have made the same choice as you have. Knowing how hard it’s been for my mum I totally understand.
    We’re lucky to have the choice nowadays. If so many of my embryos weren’t chromosomally abnormal and if I were even 5 years younger, I’d definitely do PGD. I wish I’d known my condition 6 rounds of IVF ago! Argh!!!
    I’m so sorry that you’re going through this. Life is so hard. I’m glad we’ve connected though and I’m here if you need me x

    Liked by 1 person

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