Limbo

Early Pregnancy with Baby Number 3.

Part 1

*Note* I wrote all of these posts as they happened as a way of dealing with all the emotions that went along with the waiting and the procedure itself. This post was started at the beginning of December and Part 4 takes us to the middle of February.

Finding out that we are expecting baby number 3 should be really exciting and a time for being happy. But if you lost baby number 2 to the most common genetic killer of under 2 year olds in the world, like we have, it makes being excited and happy a very difficult thing.

I took a pregnancy test after putting my little chap to bed on a Friday night in December. My husband was out on his Work’s Christmas party and I was about to have a long soak in the bath after a hectic day chasing a three year old around. I fully expected it to be negative. But it wasn’t. And neither were the second and third tests that I took. I can’t even describe the feelings that I had. Of course I was happy and excited but I also filled with dread and fear of the weeks and months to come.

We knew before getting pregnant again that any baby that me and my husband had together would have a 1 in 4 chance of having Spinal Muscular Atrophy. We knew that we could have the baby tested for SMA at 11 weeks pregnant. And we knew that if the test came back positive that we would be offered a termination. We had discussed this at length and decided that should that be the case that we would terminate the pregnancy. This isn’t a decision we came to lightly or a choice that I ever wanted to make for myself but we had to take more than just us into account. How could we give our 3 year old another sibling that he would fall in love with and then have to watch him or her die? Dylan already asked us why babies die, or when someone else’s baby was going to die or other such devastating questions. I am in no way saying that this was the only reason. How could we put our families through it all again and mostly, and rather selfishly, there is no way we could put ourselves through it all again. I knew in my heart that if I had to watch as another one of my babies took their last breath in my arms there would be no return for me. I couldn’t mend my already shattered heart a second time.

Before getting pregnant a 75% chance of any future pregnancies not having SMA seemed like excellent odds but with a little blue line confirming that a cluster of cells was multiplying and creating an embryo inside me that 25% chance of it carrying this deadly DNA seemed like totally sucky odds all of a sudden.

So there I was sitting in a bath sort of grinning to myself, butterflies in my tummy, brain screaming “oh fuck oh fuck oh fuck” and my eyes leaking. I think I sat there for quite a while. Shock. Eventually I dragged myself out of the bath and went to bed.

Then a new wave of panic hit. I actually have to tell Joe now. How the hell do I tell him? It was fine with baby 1 and baby 2, it was just happy news, there was no horrendous flipside that had to be taken into account. Part of me thought quite seriously about just not telling him and waiting until I knew one way or the other but the idea of keeping this to myself for 7 weeks was idiotic. I tried to sleep knowing that Joe would be quite late coming home but obviously sleep eluded me. I just lay there for a bit. Then I google some things. Then I went back to lying. I listened to the radio but it was some annoying talk show so I turned it off. After lying for a few more minutes I turned on an audio-book I’d been listening and tried to get myself lost in the words. I had been enjoying the book and the reader was really good but my brain was louder “1 in 4… abortion… Chorionic villus sampling… 75% chance of no SMA… termination…” and so on for the next few hours.

Joe came in just after 1am and I just blurted “I’m pregnant” at him and his poor drunken bewildered face. He hugged me really tight and instantly relaxed. After a bit of a chat we fell asleep.

Over the following few days we made a few decisions. We would call the genetics clinic on the Monday to arrange the CVS at 11 weeks pregnant and to discuss things further. We went over how we felt about the decisions that we might have to make and we were still very much on the same page. Neither of us could continue with the pregnancy knowing that ultimately it would lead to us losing another baby, it would be unfair to the baby, to Dylan and to our wider families. We also decided that we did not want to tell any one else that I was pregnant. We told our parents that we were expecting Dylan pretty much as soon as we found out. With Eilys we waited until after the 12 week scan and we surprised everyone with the news on Christmas day. But this was an entirely different situation. What would be the point of the rest of our family and friends going through the 7 weeks of worry with us and it might add pressure to the situation to us. A part of me was worried that some might want to us to reconsider the termination if it came down to or that us having a termination might draw a wedge between us as a family.

Abortions are such an emotive topic. My own views have always been that it is a woman’s right to do it if it was what she felt she needed to do without anyone else judging her for it. Saying that though it was never something that I could have contemplated for myself. But like I keep saying this is an entirely different situation and one I never thought I would find myself in. As much husband put it to me when we were first talking about our options when having a baby after Eilys after finding out that the baby had SMA both a termination of the pregnancy or continuation of the pregnancy would result in a termination. I feel guilty just thinking about it, to be honest. I feel as if by contemplating an abortion I am in some way saying that if I knew about Eilys beforehand that I would have terminated her and how can I even think that. She enriched all of our lives, she was such a light to all who had the pleasure of knowing her and I would never, could never wish that she wasn’t here. But also by having another baby with the same condition would mean that in a lot of ways our memories of Eilys would be diluted as we did the same things again, went through the same heartbreaking process again and how could we do that. I know that some families have gone on to have other babies with SMA after losing a child and I have nothing but admiration for them in doing so but it is just not something that I could have done.

At this point, I feel like I should say that during our Genetic Counselling we were told that IVF was a route that we could go down but as we already had a child we would most likely have to pay for this ourselves. The Genetic Consultant explained that the odds of getting pregnant from pre implantation genetic diagnosis or PGD were only about 30% per cycle and that to do this privately it would be very expensive and we could quite easily end up with no baby at the end of it all. It really is terrible that because we already have a child that we aren’t able to have a few cycles of IVF on the NHS but I completely understand why this is the case and I am only thinking it is terrible because of the situation we find ourselves in, ordinarily I would agree with this being the case. We quite quickly dismissed this option as spending that amount of money on IVF would take what little money we had away from Dylan and any children we might go on to have and again, it wouldn’t be fair on him/them. Also I felt quite strongly that we had been through enough stress recently and I wasn’t sure if we could undertake any more. More recently some friends of ours have been referred for IVF and were basically told that they would be better off just trying to get pregnant naturally rather than going through PGD as the waiting times (8 months+ for an initial consultation) and odd were stacked against them. Add into this the fact that I am nearly mid-30s and my fertility isn’t as good as it was 5 years ago, you get what I am saying. The odds for PGD working for us were stacked against us.

On the Monday I contacted the Genetic Counsellors that we had been previously referred to only to find that he’d retired. They took my details and said they’d call back when they had a new consultant to take over our case. She called back the next day and we were in London, in the V&A museum to be exact. Dylan and Joe had gone to find a loo so I sat on a bench, in a rather beautiful corridor on the phone talking about the process that we were about to embark on. She told me that I would need to go for a dating scan at 8 weeks pregnant and once that been done I would be booked in for the CVS appointment at the Liverpool Women’s Hospital when I was 11 weeks and 3 or 4 days pregnant. She explained that as long as the sample was a good one they would have the results in 3 to 5 working days and we would go from there. Before this telephone conversation I was being quite blaze about happened during an abortion but she explained that the options weren’t quite as straightforward as I thought. Before 13 weeks they offered what is called a surgical abortion where you are sedated and a doctor removes the foetus from your womb but they won’t do this after 13 weeks. After 13 weeks you essentially have to deliver the baby after they give you drugs to induce a miscarriage. It was at the point that I pretty much stopped sleeping.

I don’t really know what I was expecting would happen if we had bad news. I think I was being a bit blasé and naive about the whole thing. During our initial genetic counselling meeting the Consultant who discussed our options with us and he made the abortion side of things sound a bit more “take a pill and that’s that” kind of deal. The reality is not that at all. Knowing that the test results from the CVS can take 3-10 working days and that a “surgical abortion” was only a viable option up until 13 weeks made the whole process more terrifying. What if it was bad news and the results took the full 10 days? Then I would have to basically go through a chemical miscarriage which would obviously be a lot more traumatic. I realise that some people reading this will be calling me names and heavily judging me for these decisions and I understand that. I have been judging myself for these decisions too. I went into this knowing that this was a possibility, I went into this knowing that there was a 25% chance that this would be the reality. I just hadn’t looked into it quite as much as I maybe should have done.

This is the end of the first part of this. There is quite a lot more. Thanks for reading. Feel free to post comments but please don’t send any abuse in regards to my views on abortion. This is a hard enough situation to be in and believe me I felt guilty enough for even contemplating it but unless you have been in this exact situation then you really cannot judge.

Thank you

x

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