Gambling

Image © Ralf Roletschek [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

Image © Ralf Roletschek [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

I haven’t blogged for several weeks. I couldn’t. My mind and body have been consumed with something that I – and my family – weren’t yet ready to share.

We have decided to try for another baby. Some might say this was a brave decision. I’m sure others would call it reckless, selfish, … crazy. It surprised me, actually. I thought we would continue to skirt around the issue until it was too late. Or, I thought we would play it safe. I thought one of us, at least, was naturally risk averse, and the other wouldn’t push them. Turns out, on matters of life and death, we are both gamblers.

We agreed that the benefits a ‘normal’ third child would bring to our family, and particularly our existing children, were so great as to make it worth the risk, the one-in-four risk, that that child will not be ‘normal.’ We did our research: we know that with no genetic diagnosis there will be no early way to test. We know that in all likelihood it will be 32 weeks before any abnormalities can be detected. We know that it might be 38 weeks before we can be even fairly certain if the baby does not have the same condition as Benjamin.

And now here I am, carrying that baby, for as long as it takes and hopefully longer.

It can be lonely, being pregnant. Those first twelve weeks when it’s just your little secret aren’t so much fun the third time around. You’re too tired to go out for coffee (you shouldn’t be drinking coffee anyway) and you’re in bed by 9pm, so the majority of your conversations are limited to a non-verbal baby and a three-year old who doesn’t understand why you’ve always got your head down toilet.

And if the whole pregnancy is to be overshadowed by fear, fear of that looming one-in-four chance, what then? You don’t like to talk to your family, to get their hopes up over a baby that may never be. You hide away from your friends – the fewer people see your growing bump, the fewer people you will have to explain to if that bump disappears before its time. You feel guilty among the wonderful online community of other mums of undiagnosed children, because you know many of them have faced the same fears and made the equally brave decision not to have another child; the last thing you want to do is reopen their old wounds.

I am blessed to have a fantastic, caring husband with whom I can share everything and be totally honest, and who is with me one hundred percent in this gamble. I am grateful to have a supportive obstetrician. I know that she knew that we would take the risk: her parting words at our pre-conception meeting were, “I’ll see you back here when you are pregnant.” I am also fortunate to have been able to talk to the rector of my local church. It is a great comfort to know his thoughts and prayers are with me. And now, I am pleased to be sharing our hopeful (I dare not say joyous) news with you. I would love to have your thoughts and prayers too.

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.