Hypothetical questions

I almost didn’t post this. It’s personal, a bit controversial, very selfish; it may upset some readers. It doesn’t even come to any conclusions. However, I needed to write it to clarify my own thoughts and, having written it, it seemed hypocritical not to publish.

I’ve written before about wanting another child, and I know it’s an issue many SWAN parents face. It may seem nonsensical, after a tiring Christmas, a fortnight of being up every night to an unsettled toddler, of Benjamin throwing up a bottle of milk over my mother-in-law’s new carpet each evening, of a house so full of toys we can barely move … but it’s a fire that just keeps on smouldering.

Some days, I can post a picture on Facebook of Benjamin batting (in an uncoordinated, stiff, kind of way) at some baubles and be proud of all he’s achieved. Others, I go along to Rhymetime at the library, see all his peers sitting and giggling, crawling, maybe even walking, and just feel I want one of those. And Jackie needs one too. It’s not rational; it’s not intentional. I know I should be grateful: what is this compared to the pain of infertility, or the pain of losing a child?

Since even before Benjamin was born I have pinned my hopes on one miracle after another, only to have each of them fade away. At first, it seemed likely that his condition was caused by a freak chromosomal rearrangement or some kind of infection during pregnancy; that our chances of having a second disabled child were as low as anyone else’s. That hope has gradually diminished and was finally all-but-snuffed-out by our genetic counsellor last month. He’d done his homework, spoken to “the scientists” and they were all certain – as certain as they can be without a diagnosis – that this is not the case. The best guess of the best guessers in the business is that Benjamin has inherited matching faulty genes from both his parents – and therefore the chance of another child of those parents receiving the same genetic combination is one-in-four.

Science can do amazing things nowadays. All they have to do is find the gene responsible, then we can have IVF and pre-implantation diagnosis, weed out any affected embryos and get a guaranteed healthy baby, right? But fewer than one-in-three children in our genetic study get even a partial genetic diagnosis. Many families have been on the study for years and are none the wiser, although I’m told results are coming faster now. And even in the event that they do find the gene responsible, we would have to find a doctor willing to apply for a license to screen for that gene, an application process which could take months if not years. And all the time the biological clock is ticking and the age-gap between Jackie and her playmate is getting ever greater.

Okay, so forget the fancy test-tubes. Why not just get pregnant, terminate the pregnancy if anything’s wrong, keep trying until we get a healthy baby? The thought of this makes me heave. It’s not just that we’d have to go for 26 weeks, maybe more, before any differences in the baby’s brain would become apparent. It’s the fact that, having had Benjamin, we know that he is happy, contented. He might be hugely delayed but he is not suffering. There is no humanitarian reason to terminate a child like him. We’d be saying to the next baby, we took a gamble with your life and you lost. We chose to create you, but now you’re too much like hard work. And we’d be saying to Benjamin: lovely as you are, we wouldn’t want two of you.

Perhaps we could adopt? A great thing to do: take an unwanted child, make it very much wanted. I went so far as to talk to a young, earnest guy at our local adoption service about it. It seems my notion that there are hundreds of young girls having perfect babies out of wedlock and handing them over to the authorities is rather Victorian. The only children awaiting adoption nowadays are either severely abused or severely disabled; sometimes both. Don’t get me wrong: I would love to give one of these kids a loving, stable home. But what is the likelihood that the authorities would place such a child – one who needs all the care and attention she can get – with a couple who are already stretched enough dealing with their own two children, one of them with severe and complex needs? Practically nil.

One evening, my parents took care of Jackie and Benjamin. Ric and I went out for a fancy dinner, our first night out without the children in, maybe, two-and-a-half years. I managed to resist texting home more than once (maybe twice?). We congratulated ourselves on not talking about the children all night. Instead, we talked about conceiving another. One of us wouldn’t want to use donor eggs or sperm. One of us doubts it is worth freezing some embryos in the hope of a diagnosis years down the line. One of us thinks it is too much of a risk to take that one-in-four chance. One of us thinks we will always regret it if we don’t try.

We didn’t get any closer to deciding. In the end, we will do something, or we will wait so long that it will be too late (we are not the most decisive people at the best of times; on our first date it took us three hours to choose a restaurant). It may be naïve, but I wonder if the only way to know how we should act is to take that risk. I have a feeling (a 75% feeling, I suppose) that if we manage to conceive, then everything will be alright. But if I’m wrong…? Could I terminate? Could I give the baby up for adoption? Would that be a terrible thing to do – bringing a child into the world in the full knowledge that it might be disabled, not having the courage to abort it, then making it someone else’s problem, and society’s financial burden. And if the baby is healthy, does that make me just as morally corrupt as if I’d aborted or given it up, just because I got lucky and didn’t have to choose? I can’t help feeling it’s not fair: we did all our soul-searching before Benjamin was born. Why do we have to do it all again? Could I trust that God will give us a break this time? We only want to do the right thing for our children, existing and potential.

One thing I do know is that we are truly blessed with the two beautiful children we have. Every day, I am glad for each of them. Glad we had Jackie first, because if we hadn’t, we probably wouldn’t have had her at all. Glad we had Benjamin: you only have to see him with Jackie to know that it was the right thing for all of us. Glad, yet grieving. Grieving for the person Benjamin will never be. Grieving for the life Jackie could have had, the life we all could have had. And grieving for the third child we may not be brave enough to try for.

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Number three

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.

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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.