1 in 4 / Genetic Stuff

17 Aug

First of all, thank you all very much for the positive feedback on the blog. Feel free to comment lots! I like the validation!

On to today’s thoughts:

For a lot of people, when they hear about Matilda, one of the first questions is whether or not we are going to have more children. It was one of our first questions too. The whole genetic side of things is a bit confusing but a few weeks ago we had an appointment with a genetic counsellor which clarified things quite a lot.

Basically, both Simon and I are carriers of the defective gene. This means that any child of ours has a 1 in 4 chance of inheriting the disease. A 1 in 2 chance of being a carrier like us and 1 in 4 chance of being totally unaffected.

 

1 in 4. It can be looked at in so many ways. If you were putting a bet on something with a 1 in 4 chance of winning, you would think that was pretty good odds. But then 3 in 4 of being either a carrier or unaffected is even better odds. The good news is that there is prenatal testing for the gene. The bad news is that it isn’t done until about week 14 or later. The harsh reality of it is that if we do decide to try for more children and we have the testing and we find out that it is positive, we would undergo a heart wrenching and devastating termination. Personally, I have been struggling with how I feel about having more children. I oscillated daily between thinking of a future with them and thinking of one without. Truthfully, I could see some advantages to living a child-free life – the freedom, the ability to go anywhere, do anything. I thought about how hard it would be with a newborn and with Tilda. I thought about how hard and unfair it would be for a brother or sister to lose Tilda too.

But thinking like that made me feel like I was giving up. Because a life with children is hard and painful but it is also full. I don’t know whether we are even able to have more children. Before the diagnosis, we had been trying for a year without success. But I don’t want to not try. And that is about all I can know at this point.

Much love

ox

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4 Responses to “1 in 4 / Genetic Stuff”

  1. Kylie August 17, 2011 at 8:55 pm #

    Oh this is a hard one…..part of me wants to say pleeeeeeasse try and have kids, i want to be an aunty to another girl and we all know how delightful these small people can be when they try (having said that we’ve just got back from a Chinese meal where C spat out his mouthful, T poured tea all over the tablecloth and no-one, especially Tim, was well-behaved) but really – it’s your decision and only you can work it out. I will be on hand to help!! And either way will be good.

  2. Danielle August 18, 2011 at 8:03 am #

    My beautiful brave friend – what an emotional time. And hard decisions to be made. But always remember how much you are loved & supported. Love you, Dan x

  3. Benita crocker August 19, 2011 at 2:58 pm #

    Hey lovely,
    Thank you so much for putting into writing all the questions that would be running through my mind and have been since hearing about Tilda. I guess at the end of the day having kids is the biggest risk you can take – you are basically putting your heart and soul out there – you get the most joy and heartache from doing it…and no guarantees about any of it. It’s like all big decisions I guess – you just go with what you think is best at the time with the information that you have and that’s all you can ever ask of yourself. The only thing I know for sure is that you are a great mum.
    Be x

    • teamtilda August 19, 2011 at 4:26 pm #

      Thank you for this lovely comment. I think like all of us, some days I am a good mum and some days a not so good one but interestingly, the thing that has come through pretty clearly for me especially in the last couple of weeks for some reason, is that really all that matters is the loving. I can do that bit easy. xooxxo

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