Genetics

DNA

Re-blogged from Monday, November 21, 2011. With a few small updates.

There is a great article in the Irish Times today about the Reproductive Revolution which is currently taking place in Ireland. It concentrates mainly on infertility and IVF treatment, but this area, I’m sure the next two instalments of the article will show, is only a small part of it.

We have all heard the gruesome stories of couples aborting a foetus because it was female, and not the male heir they wanted. That wouldn’t happen in Ireland, right? Couples seeking IVF can select sperm donors based on the colour of their skin/ hair/ eyes, how intelligent they are and whether they hold a good job or not. Fair enough, you might say…or is it? Because it’s only a matter of time before couples may be able to apply these selection techniques to their own genetics.

Relating this to my own experiences, I have to say the answer is not so clear cut as one might think. 

You all know about Carys by now, but for those who don’t, she has Cardiofaciocutaneous Syndrome. She can’t walk or talk, sign or communicate. She has a multitude of medical conditions, among them Hypertrophic Cardiomyopathy, which is a deadly heart condition, Epilepsy, and Cortisol Insufficiency, which means she could get seriously ill very easily from a minor illness. She has Sensory Processing Disorder, and it’s now being suggested that she may also suffer form Cortical Visual Impairment. She may never grow much taller than 4ft.

Her future is therefore limited in terms of her experiences and life expectancy. Her future, and ours. But the modern Reproductive Revolution gave us a choice, didn’t it?

These were our options; abort or let nature take its course.

There was no magic cure, no medicines, no surgical procedures which could help our baby. She was left to her own devices, and there was nothing we could do to help her.

Until that moment, I had never had reason to doubt my own gene pool. I had believed that the combined natural genetic resources packaged within the cells of both our bodies would spontaneously produce perfect children, no intervention required. Well, we had managed it twice before, with two lovely sons to show for it

Is she in pain, we asked the experts. We didn’t at that time know the full extent of our life sentence. Doctors told us there was no sign of distress, despite the overwhelming presence of a Cystic Hygroma and Foetal Hydrops squatting like trolls over our daughter’s fragile life as it teetered on the edge. Both usually signified something much worse, the latter almost inevitably leading to death and stillbirth.

We decided to let nature make its own decision; we were too weak, too confused, too naive. Besides, we never stopped hoping. As a writer, I make my living wondering, ‘But what if…’. In this case, my thought process extended into doubting the doctors. Never a day goes by now when I don’t thank that nagging little voice which persisted with its ‘what ifs’, and prevented me from taking that awful, final step.

Don’t get me wrong; living with the consequences of bringing up a less than ‘perfect’ child is heart-breaking, back-breaking relationship-breaking, sanity-wrecking stuff. No-one should have to go through it. But some of us are, right now.

We had no idea how the future might unfold. Still, I would rather be clueless and innocent, than knowledgeable and guilty. All mothers live with guilt at some level, but to possess the power which decrees this one lives and that one dies, well, I just wasn’t ready for that.

That doesn’t mean I judge others for taking a different route than me. One lesson I have learned through having Carys is most definitely not to judge others. She and I are on the receiving end every damn day, we know how it feels. I just want people out there not to react to their bad news through emotion and fear alone. If I can cope, anyone can. At the same time, I understand that what’s right for me may not be for you.

Parents-to-be facing these important life-changing decisions should be given counselling. I had no idea of the far-reaching impact my decision would have. How many lives it would irreparably alter; our sons, the grandparents, the uncles, aunts, nieces, nephews… for this was their child too. And yet, at the time, I never considered them at all.

By choosing life, who was I pleasing? Me, so I would never have to think of myself as a murderer? My husband, so he would never doubt my love for him? My two boys, so they would never have to grow up wondering about their only sister?

With the child growing in my body, I came to realise that the decision ultimately was mine. Everyone else had to toe the line. Ah, so it was a selfish act, rather than a self-less one.

For with it, I doomed my family to a life beyond the realms of normality. Carys restricts us even just by being. The simplest tasks become nightmarishly arduous when you have a special needs child. You can’t be spontaneous. Travel is just this side of possible. Giving her a bath is exhausting and stressful. Always thinking where will she sleep, how will she sleep, will she sleep at all? What about her medications? Have I calculated them right? What if I run out? Will she take them? Will I be able to get the right kind of food to mix them with? Will she drink? Will she get dehydrated? Where is the nearest hospital? How will we get her there? How can we explain it all to a foreign doctor?

The list of worry and doubt is so endless, that half the time you don’t go anywhere or do anything. Is that fair on the boys? Conor and I used to be mountain climbers, long distance trekkers, backpacking travellers. Round about now was when, pre-Carys, we had planned on taking them on their first such holiday. Now, even a walk round the woods becomes a major logistical nightmare.

So, given the Reproductive Revolution and today’s advances in medical science and technology, would I make the same decision again? Would I examine my baby’s genetics, manipulate them and abort if they weren’t up to scratch?

Well, the fact is, I love her with the same passion any mother has for her child. We have learned to live with her syndrome as being as much a part of her as her smile. We wouldn’t be without her in our lives. She may take a lot out of us, but she gives back in equal measures, makes us better people than we were.

Is that answer enough for you?

3 thoughts on “Genetics

  1. Great post Ali.
    We can’t change the way things are and I wouldn’t give up my little man for anything, the things he has given us are immeasurable and the exhausting job of caring for him is amply rewarded with his love and sometimes knock-you-over-because-you-weren’t-expecting-it hugs and kisses.

    Liked by 1 person

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