I’ll admit it, I’m broody. I’m desperate for another baby. Another normal baby. I want it for myself – although I love him to bits – because I feel deprived of that wonderful experience of watching a child learn, grow, and develop day by day. And I want it for my little girl – although she loves him to bits – to get the playmate we intended her to have.
But it’s not as simple as coming off the pill, getting a babysitter and cooking a romantic dinner for two. The chances are, his condition is the result of a recessive genetic defect in both my husband and I. This means, statistically, we have a one-in-four chance of any subsequent children having the same condition. How should we react to this prediction? It feels like “one-in-four: 25%: that’s not so bad. Twenty-five percent disabled = 75% normal.” But of course it’s not like that, it’s all or nothing. If the child is that one in four, it’s devastating; for the other three, it’s as if there was never any risk at all.
Then there are the un-quantifiable possibilities. What if it’s not a recessive genetic condition after all but a one-off mutation? Sometimes, I can convince myself that he has other characteristics indicative of a chance chromosomal abnormality – crooked, low-set ears, tapering fingers. We can’t rule out an infection during pregnancy. The geneticists are beavering away, but they may or may not be able to find the answer, and it may take one year, or two, or ten… in the meantime I’m not getting any younger.
When (if) the faulty gene is identified, we have multiple options, ranging from adoption, through IVF and pre-implantation diagnosis, to genetic testing during pregnancy. This makes the decision even more difficult than the simple “keep him or not” we were presented with when his condition was discovered. At present, in the absence of any genetic diagnosis, those options are narrowed to adoption, late term ultrasound scanning (and possible late term abortion), or simply taking any child as it comes. Which brings us back to that one-in-four. Are we willing to take the risk? Sometimes I think that having two disabled children couldn’t really be any harder than one. Sometimes I think it would be the hardest thing in the world. I’ll keep thinking. I hope we keep talking.