25 September 2015

When you never think it will happen to you, part two

So I just don't even know how to begin this, but I feel I need to. I need to write down whats going on and all these thoughts and feelings swimming around my head.

 It's been so quiet around here and I just have been getting caught up in our daily life and big events such as Theo starting school, but this week, like this exact week last year, our world has been turned upside down.

 When we originally went for our 20 week scan the baby wasn't in a good position for the sonographer to get all the relevant measurements to know that all was developing with baby as it should. We were given another appointment for another routine scan to try and get the bits she was unable to. Ten days later we returned to the clinic for the second scan, and whilst she managed to get most of the information she needed, the heart was proving difficult to see, once again because of babies position. We were therefore referred for an appointment with fetal medicine to have a scan with the doctor. We had to wait for two weeks. This brings us up to now, 24 weeks.



 With the last appointment of the day and the doctor running late I sat alone in the waiting room (Rob had to pick Theo up from school) waiting for my scan. When finally I was called in the doctor tried and get a better look at the heart, but once again the baby was in a difficult position. After a long scan he sat me down and explained that he had seen, but couldn't be sure, something that concerned him about the heart. He also noticed that the baby's foot wasn't in the correct position. Overwhelmed with the information they explained that I would be referred to the cardiologist for a fetal echo scan to look in more detail at the heart. They also mentioned that there could be a possible link between the heart and the foot abnormalities. This all pointing towards a possible chromosome problem.

 My heart has been pounding these last few days and my emotions go up and down trying to make sense of it all. My mind raced with millions of questions and thoughts, of course ending up at worst case scenarios and how on earth we would deal with it all. In terms of my original risk for chromosome abnormalities I was very low risk, 1 in 19,000. I tried to stay positive, keeping in mind there was every chance that everything could be ok, and just trying to take each step as it came. But it's hard. My heart broke when thinking about the baby being unwell, and the effect it would have on us and of course on Theo. How could we explain to him, when he's been so excited and eager to meet the baby, that it might not happen. I don't have the answers for this.

 On Wednesday we had our scan with the heart specialists and they confirmed that the baby did indeed have a problem with its heart. The problem would be fixable with surgery after birth and hopefully the baby would be able to lead a normal life. It would obviously be a traumatic time for us all and the baby would be in intensive care and there are the obvious risks of heart surgery on a newborn. But perhaps we could deal with this. This is obviously not what we were hoping for, and the shock of it becoming real is just too much to put into words. But just the fear of this not being the worst of it is something I just can't conceive. The nature of having a heart problem and with the added foot problem is something of obvious concern for the doctors, and we were offered the amniocentesis. Then choices and decisions would need to be made about how to continue.

 How do you make that decision? I can by now feel the baby moving around lots and with every kick and turn I'm reminded that there is a life in there, a life that is unwell, but alive all the same. There is already a connection there, a nurturing and a love for this being that is growing inside. There's been six months planning and imagining this baby in our lives, and to have that taken away is the hardest thing I've had to think about in my life. To know that we might have to make a decision to end it is something I never ever want to do. But it is a real possibility. How can it all change in such a short space of time. This time last week, even though we still hadn't had the all clear, it was all still real and going to happen, the baby would be born when it should and we would have our family of four. You get to this point in pregnancy and feel that its safe to become invested in that future. I know that anything can happen at any stage of pregnancy, and you can never be fully certain of the outcome, but perhaps you can feel a little confident that everything is going to be ok and that in a few short months you will have a new baby in your arms.

 So yesterday we went back to hospital once more to have the test. I know some people might not want to know, but we do. The baby may be too sick to survive the rest of the pregnancy, and even if it did make it, it may be still so poorly and we don't know how would we deal with the big change that would come with this sort of thing. We have strength for some of it, but I know personally I am unsure if I have strength for it all. Then there is other people to think of, the impact on Theo's life, our marriage, our family and loved ones.

 I couldn't look at the screen, the view of the baby is just too much, I feel too much. I don't want to accept that things may turn out for the worst. How would we carry on with our lives, try and help Theo come to terms with the change and loss of the idea of a brother or sister. I'm not sure whether I'd ever be able to do this all again, to go through pregnancy. It's just so painful. My heart is broken in a way I never thought possible, and I only know it could get worse. There may be so much more pain to come.

We have everything crossed that the baby could be ok, other than the heart and foot problem which both would be fixable. But now we wait, we wait for news that we don't ever want to come.

 I know that perhaps something like this is incredibly hard to read, and I don't write it to make people feel uncomfortable. I have written it because I need to. I need to pour some of these feelings out, and to try and make sense of it all. There is still so much going on, so much to come to terms with. I want more than anything for it all to go away, for me to feel the kicks and feel joy and not sadness, to look forward to our future and to not have to put our child, or any of our children, through this.

 I'm not going to ask for much, just that those who read this to just send out some positive thoughts that it might all turn out ok. Thank you x

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