Monday 18 March 2013

"Is there anything I can do?"

People's reactions to hearing about the miscarriages are really interesting. My main interest are those that suddenly say, "Oh we had real issues too with having a baby". It's like this dreadful unspoken thing, isn't it?

From the moment your periods start, there's that silver lining that you hope that everything is working down there despite the cramps and feeling like you would mug a child for a chocolate bar. Even though you are far too young to have a baby, you think to yourself, "It's ok, things that are meant to be happening are happening so that when I am ready, I can start a family." I am currently teaching the puberty part of Sex Ed at school to a group of pale faced 9 to 10 years old children and there's that question that comes up- why do we go through puberty? Once they've skirted around the issue with quiet comments about getting bigger, one will pluck up the courage and say, "it's so that we can have babies when we're older." (YES, children of Woolwich- OLDER and not 14! There are so many other awesome things that you can do at that age!)

Due to the problems my parents had with having Robert, my wonky chromosome was known to me for some time. At the age of sixteen, I received a letter from the Genetic Counselling department at Guys Hospital in London Bridge, requesting that I come in for a counselling session. Yes, a very young age to hear the things that I was told (chances of having a viable pregnancy, chances of nasty syndromes etc.) but I guess at 16, you could be ready to start a family and it's best to be armed with the facts.

With those facts, every long term relationship has started the same way with me saying that things could go very wrong if we wanted to start a family together. It doesn't really mean much to anyone until you are going through recurrent miscarriages, after all most of your adult life is spent trying to not be pregnant as it's either the wrong time or it's the wrong person. I did always lay it out on the table and didn't hide it away as like Guys told me, I felt it was something I needed to be open and honest about.

I told Paul pretty early on but from the word go, we knew our relationship was going to be something special. After miscarriage number 3, we went to the genetic counselling session (summed up brilliantly as a bureaucratic wank by my dad!) together and Paul had it explained to him what was happening. Basically with every new embryo, all the genetic details of the mother and father get thrown together and as he was told, it's a bit like a load of jumbled old socks (I think he honestly thinks that I am now made from socks...). The bad bit is that when the chromosomes are like that, they are very weak and easy to break which is what happened when I was created- my 9 and 18 decided to swap ends so there's the right amount of genetic data but it's in the wrong places (syndromes occur when there is too much genetic data and you get extra long strands). So I have various possible outcomes of pregnancies- there are two that are viable healthy (one where the embryo would take Paul's 9 and 18 or one where it takes my version) and two that are viable not healthy (trisomy 9 and trisomy 18- Edward's Syndrome) and the rest wouldn't make twelve weeks. They decided not to test Paul as they felt there was no reason to- they will be now!

Yes, poor Paul. Looks like it's his turn to have all the pokes and prods now. All my blood work came back healthy, there are no twists, cysts, fibroids or any other known reason apart from the genes for my miscarrying so now the doctors will be looking at him to check if there isn't some fatal mix happening (apart from the ginger hair, support for Arsenal and love of cricket). I've had a lot of people asking if it's not something to do with not being able to carry boys/girls but that would have come out in the bloods. At the moment, all I can see it as four bloody unlucky rolls of the dice.

It is a lottery with every pregnancy being subjected to the 30% rule. When you're told about 1 in four pregnancies ending in miscarriage as a normal person, you can be forgiven for thinking , with a non mathematical mind as mine is, that it almost works out that if you have four pregnancies that one of them will not make it to full term. Nooooo, that isn't how it works. It's a lottery of chances- those bloody percentages that constantly keep cropping up. You can keep being in that percentage or you can strike it luck and never be affected by one.

People are being lovely. There is nothing that anyone can do or say to make it better but it's really lovely to be completely enveloped by a lot of caring people. The comments have ranged from "Have you thought about IVF?" (yes, it's very scary), to "Have you had all the blood tests done?" (yes, they're all fine- it's the stupid genes!) even to people offering their own eggs! It's a crippling situation for everyone as there is nothing anyone can do, apart from the pros, and even then they can't give a guarantee that it'll work every time!

I really feel for my parents and my step-mum. They're coming to this from a threefold of experience- medical knowledge from their training, personal from when they went through it themselves and finally from the parental side that they don't want their daughter going through it. I didn't tell my mum and dad about the two previous miscarriages, worrying that it would drag up buried emotions. I should have done, I know that now but at the time it made sense and that's all you can do.

The thing with my mum, dad and step-mum is that between them, they got three healthy children and it's giving me hope that maybe we won't have to go down the invasive route when we're ready to try again. I can't give up now.

1 comment:

Andrea Ellison Photography said...

you are simply marvellous and I love you x