6 December 2017

Finally.

Our appointment with the IVF consultant. And the PGD nurse. And the Geneticist. Three professionals, and us.

Difficult appointment, sitting in the waiting room, with the other couples there, knowing that I have experienced something they may not have: pregnancy. Knowing that we all want that.

We had so many questions for that appointment. questions that were not answered, or were answered in roundabout ways.

I wanted to know what would happen with the viable embryos that were not implanted, I was bluntly informed that I should prepare myself for not getting any viable embryos. I reiterated my question, acknowledging that they had already explained that they only had a 26% chance of success, and I was told that they wouldn't talk about that unless it became a possibility. I figured out that obviously the possibility of that was slim.

We were told (in a roundabout way) that once we got to the top of the waiting list, they would start working on a genetic probe, and once that was done, they would be in touch. They wouldn't be able to let us know how long it would take to look at all the possibilities of chromosomal arrangements until they were done. Essentially, in one fell swoop they told us that we would get to the top of the list, but they had a lot to do before they would tell us that that is where we were, and we would stay there until they were good and ready. The second thing we had to figure out from that was that there weren't just the simplified four options that the geneticist explained to us in that first appointment. It took google, and the balanced translocation support group on Facebook to help me figure out that one. Turns out there are more like 16 "options" and only 2 of them viable (in our case).

[In other cases of balanced translocation, involving different chromosomes, or different breaks on the same chromosomes, there may be more viable options, but only two would be genetically typical. Some other unbalanced translocations can survive through birth and beyond, and may or may not have learning difficulties, physical impairment, or the ability to live to adulthood.]

There is a great infographic on slide 22 found here which shows all the possible permutations - a lot more than the 4 we originally understood it to be. In other parts of the slideshow, it shows that at the time of the study (2011), with the 50 people with reciprocal translocations that they worked with, only 16% of embryos came back genetically normal. (It also notes Robertsonian translocation, which is somewhat different to balanced translocation (which is called reciprocal). I don't know as much about Robertsonian translocation, because it doesn't affect me, but I understand that the miscarriage rates are similar, but they don't have as many possibilities for embryos. This infographic does not indicate the chance of each possibility occurring - I think that varies for each person with a translocation, but I am not 100% on that. I get the impression that it's not as high as a 50% chance of genetically typical, but that the main four possibilities have a much higher chance than the next two, which have a higher chance than the next ones... I think I would need to actually be a geneticist and studying it to have an idea of the true chances, as none that I've met have ever felt obliged to share that type of information with me.

The information, or inability to really give us chances, given it really is such a new field of science, (the combination of IVF with PGD that is) meant that we left that appointment none the wiser, and thinking that we would be getting called for IVF in December 2018. It was that information and a lot of google, and a lot of that Facebook group, that helped us come to the decision that we really couldn't be bothered with IVF if we really don't have to, because it's messing with hormones, to prevent a miscarriage at 3 and a half months. Traumatic as that was, it's grim enough having to go through IVF, and we had to wait a year. We decided to give it a chance on our own, because that would be what we would face after our first IVF child anyway, and go in with the risk of that later miscarriage, knowing that most other possibilities wouldn't slow us down too much in moving towards our goal.

I didn't write about that appointment closer to it actually happening because I couldn't get my head round the fact that I had so little information from it; I had hoped to get all the answers, and instead I was given more uncertainty.

I started writing about this because I thought I was facing IVF as the only way to have children, because at that stage I was so terrified of having another miscarriage. I took such a break from writing because I was so annoyed with the IVF giving me hope, and that hope being taken out of my hands, bashed along the ground, thrown through a mangle, held underwater, then given back to me, gasping for breath, battered, bruised, and diminished. I took that hope, and I threw it towards my career instead, got a wee boost there, I threw myself into aerial a bit more, and trained harder than ever, and I've never been fitter. I took that hope and breathed new life into it, nursed it back to a bigger and better place, and we tried again, and tried again, and tried again...

We got a letter from the NHS in between Christmas and New Year 2018, inviting us to an appointment on 4 February 2019 for IVF. Given I'm on my PGDE, I knew long before the letter came through that I would be going to that appointment to "press pause" so to speak on IVF until after May. As I have written before, the stress of each thing has helped distract from the stress of the other; it's nice to get that letter and have another thing to focus on, so I am not placing too much hope in it. I'm hoping that my renewed hope does not need to be faced with IVF by then, but only time will tell!