[escapologybb]

This is amazing news, it really is.

Slightly off topic but I would like to address the people in this thread saying things along the lines of "with a medical condition is serious as this, it's better to abort"

Yeah, fuck no.

I was born in 1978 in the UK with spina bifida and Chiari malformation of the back of my brain which basically means a couple of the ventricles are being pulled by my spine out of my skull.[1] (Very basically)

If you look at any sort of scan of my brain and ask a Neurologist what they are looking at and they will tell you very forthrightly that the person whose scan they are looking at will definitely be uncommunicative, will have cognitive impairment, will probably be on a ventilator and will definitely have a foreshortened life. (This is not from some hypothetical thought experiment, I've done this over the years)

So, speaking as a 41-year-old quadriplegic hacker with spina bifida who's not on a ventilator; let me say that life finds a way. I was written off so many times it's unreal, medicine is not a science but rather a series of very very very good guesses. We need doctors, but we need lots of opinions and you don't have to do what they say. They gave Stephen Hawking three or four years to live when he got his MND diagnosis, he lived another 30 years or so.

My life is great, yes I'm quadriplegic but once you get past that little speed bump I have a job, friends, a wonderful partner, family everywhere, a very serious addiction to Raspberry Pi's and exploiting networks and I feel incredibly lucky. I am so glad I was not aborted.

Okay, because this is the Internet it's time for the caveats

Yes I am aware I am slightly unusual and not all quadriplegics with spina bifida dodged a bullet in quite the same way I did.

Also, I think that the woman who is going to be carrying the baby to term has the right to decide whether to abort or not. Regardless of my opinion because I did not have to have a baby.

[1]: I know, eww right? :-)

[georgewfraser]

Your story is amazing thanks for sharing. Hypothetically, if spina bifida could be detected by pre-implantation genetic diagnosis, meaning that an embryo that was destined to be a person with spina bifida could simply not be implanted, would you also oppose pre implantation genetic diagnosis?

[escapologybb]

That is a pretty wild hypothesis, but I would have to say that when we are at the point of editing genes to get rid of debilitating diseases then sign me up.

I am very happy the way I am right now, but given the choice then of course I would choose to be able-bodied. It would be asinine for me to think otherwise.

So yes, if we could get to the point where we are editing the genes of something in a test tube could not survive outside of that test tube that then might potentially go on to be a human then it is incumbent upon us to make sure they are healthy as much as we can.

If that makes any sense!

[georgewfraser]

The scenario I was describing is a little different: suppose we could detect spina bifida in an embryo before implantation. We could simply opt not to implant the embryo; it’s not the same as abortion, but it does prevent a person with spina bifida from existing. Is that bad in your way of thinking?

[bastardoperator]

It’s important to mention that spinal bifida can denote more than a single birth defect. I have spinal bifida occulta and have never had any medical issues. I didn’t even know I had it until a doctor pointed it out in x-ray for an unrelated injury. My mother’s first child had spinal bifida myelomeningocele and did in fact die at a very young age due to complications stemming from her condition.