It has been lovely to read all of the congratulations on Facebook today. We are very touched. I fully expected ‘oh my god are you mad?’ comments and am somewhat disappointed no one didn’t. You are a polite bunch.
The two questions I was sure someone would ask were, Was it planned? and, have you had tests? I can fully understand why people would be thinking that. I mean surely you’d have to be bat sh1t crazy to be pregnant again when you have two children with disabilities already and the youngest is only 10 months old. So I thought I’d clear it up for all the nosey parkers out there.
The Tidy Tyrant and I had always planned to have three children (in fact he thinks we should have four but he can bugger off unless someone comes up with a way for a man to be pregnant!). When I was pregnant with Huxley we said that if we had another one with additional needs we would stop at two. Then Huxley came along, and it was a shock that he had Down’s Syndrome, and our initial reaction was that our family was complete. But then we got to know our little Huxley, and well he is super awesome, and having two children with disabilities wasn’t the disaster everyone thinks it is. And then we got back to thinking that we still really wanted three children and that was our vision for our wee family.
We met with a geneticist again because we wanted to know if there was something going on between us that would mean we would always produce bambinos with chromosome wonkies. She told us that although they both have chromosome disorders, they arise from entirely different genetic processes and are completely random. In fact she said it was so rare for this to happen twice that we should go and buy a lottery ticket!!!! She explained that our chance of having another baby with a chromosome abnormality was the same as that of anyone else my age in the population. Obviously given my age we had to be aware that the chance of another one with Down’s Syndrome would be 1 in 100 at age 39/40 rising to 1 in 20 by the time I was 42. So if we wanted to reduce the chance of this happening then we should think about it sooner rather than later.
We went home and talked it through and were both convinced that we were still keen for a third bambino and that if we had another one with Down’s Syndrome that would be ok as Huxley is just so blooming awesome. Now if it wasn’t for my age, I wouldn’t be having another baby so soon after Huxley. But I’m 40 this year and the risks only get higher and higher. What with having two children with additional needs to look after I really would rather do everything in my power to reduce the chances of this happening again. So there you have it. That’s why I am pregnant again so soon after Huxley.
When very rare things happen to you, you start to think that everything unlikely to happen will happen to you. What I mean is, that I no longer look at a statistic rationally. I automatically assume that rare events are in fact very likely to happen to me. So what I was worried about for this pregnancy was that this time I would have a baby with a much more severe disability. Not that I am walking around like a quivering wreck everyday of my life; I am realistic enough to know that you can’t waste your time worrying about what might never happen.
We decided that this time we would have the non-invasive prenatal test (NIPT) done. The one causing such a ruckus in the press and the one they have introduced in Iceland and have had no babies with Down’s Syndrome born since. We didn’t have it because it would have altered our decision to continue with the pregnancy if the baby had Down’s Syndrome. It wouldn’t have. We would be very lucky to have another little Huxley in our lives. But this time, if the baby did have Down’s Syndrome, I did want to know before he/she was born. I was glad I didn’t know about Huxley until he was born as I would have read all the lists of symptoms and problems with Down’s Syndrome. No doubt I would have spent 9 months worrying about the disabilities he would have. As it was I met Huxley first and not the condition and he is just bloody marvellous. So now if I got a Down’s Syndrome diagnosis I knew I wouldn’t spend the whole pregnancy worrying about it.
The reason we had the NIPT was not because it tests for Down’s Syndrome; it has a high detection rate for Patau Syndrome and Edward’s Syndrome. Both of these are trisomies like Down’s Syndrome in that they contain an extra chromosome, but chromosomes 13 (Patau) and 18 (Edward’s) instead of 21. Most children with these syndromes do not survive the more than the first few days or weeks of life. Now, these conditions are very rare, but we are pretty expert in rare so I was worried that the baby would have one of these. We were extremely pleased to get the results last week that there is a less than 1 in 10,000 chance of this baby having either Down’s, Patau or Edward’s Syndrome and the baby is low risk for having any sex chromosome abnormalities. I am very, very glad that I don’t have to make any difficult decisions about a baby with Patau or Edward’s Syndrome.
NIPT doesn’t test for everything that could be wrong with a baby. In fact I don’t think it would detect Daisy’s chromosome abnormality. So I obviously can’t be sure that this baby will be 100% healthy. But neither can anyone else having a baby. So we just have to have our fingers crossed that this little Stov won’t bring any more surprises. But even if it does it will be loved just as much as its big sister and brother.