It's over....

Today was the longest day of my life, and I can only hope that I never go through this again. I'm exhausted, emotionally and physically and feel as though all my stuffing has been knocked out. Perhaps the most difficult part was the number of small but significant difficult moments that came up through the day.

This post may contain some slightly difficult issues, so if you are feeling sensitive I'd suggest you read it when you're feeling stronger. I certainly don't want to upset anyone.

I arrived at the hospital at 830 this morning, starved from midnight as advised. I knew that it was very unlikely that I would be in theatre before 1230 as they had warned me that I would be on the emergency list. Being a Monday, I knew there would have been lots of other emergencies over the weekend, so I was sort of prepare for a wait, but I was needed at home for the evening, so I could help with James. We're having some difficult evenings at the moment (last night was a classic - having been sat on the toilet on and off for 5 minutes, he did a massive poo in the bath so we needed one of us to shower the children, the other to deal with the rather unpleasant bath....), so I couldn't leave David home alone with both children. Plus, I wouldn't have been able to get home from the hospital without him.

I had explained this last week, and begged them to make sure I was on the list as early in the day as possible. Sadly, this didn't happen. The night SHO had failed to put me on the list early enough and when the day team came and told me I was ver upset. I begged them to get me on the list earlier, explaining that I would have to self discharge if it got to 6pm. I find it really upsetting that I have lost my baby, have chosen to attend for an operation, yet cannot be added to an elective gynae operating list. If I was having a termination, it would have been a completely different story, with me being far more in control and more likely to get a slot that suited me. It's really not fair and I will be bringing this up when I write a carefully worded letter to PALS.

When the SHO was doing the consent form, I asked whether the products could be sent for genetic analysis. Explaining that we already had a severely disabled child, and that knowing that there was (or wasn't) a genetic explanation would help us gain some closure. Apparently it isn't protocol until you've had three miscarriages, due to NHS funding issues. I know James' problems don't have a specific genetic explanation (although there is strong evidence that there is a genetic component in autism), but if we knew that there was a chromosomal problem with this baby that might have a recurrence risk then we can start making decisions about whether we would continue trying to extend our family or not. The thought that I may never hold another baby in my arms fills me with sadness and sorrow, but I know we would never be able to handle another severely disabled child with James' needs. I couldn't provide the sort of home I would want to provide for any of my children if we brought another disabled child into the world. Of course, I am aware that there may be no answers from these tests. I am also very aware that tests will not rule out autism, and that we could proceed with a pregnancy and be facing rearing another autistic child. None of this is easy to deal with, and I guess I'm quite raw at the moment and will be guided by how I feel a few weeks down the line. We discussed many of these issues before trying for a baby, and whilst in the first weeks of this pregnancy, so I know we'll make the right decision for us.

Eventually, the registrar agreed to write the form, but asked me to take it to the genetics department myself and talk to someone there to try and persuade them to do the test "off protocol". I was aghast, and it was the hardest conversation I had all day but I must have found a symmpathetic laboratory assistant as she took my request form to the powers that be and they agreed without a fuss. But there was more to come - when it looked as though I would not be going down to theatre until very close to the cut off time to get the sample to the lab, they suggested I took the sample up there myself! Or alternatively get my husband to do it.... I'm sorry, but I found that totally inappropriate, I would have just about come round from the anaesthetic and was expected to toddle down the corridor to the genetics centre holding a jar that contained my dead baby. I lost it at that point and told them that the porters would just have to do the job they were paid to do.

Finall, at 230, they let me know that I was going down to theatre. I started getting dressed and then removed my jewellery etc. I asked where I could store them and was told just to leave them by the bed. I was shocked, especially when I was told that they had never had anything go missing. There was no way I was going to take that risk - I have had £4000 worth of jewellery go missing from hospital grounds so once bitten, twice shy. I demanded somewhere locked for my valuables and was told there was nowhere. I lost it, screaming and shouting at the poor healthcare assistant, refusing to go to theatre until somewhere was located. Eventually everything was easily sorted, but not until I had had to get beside myself with frustration. Yet another thing I'll be mentioning to PALS...

On my way to theatre, I became more and more emotionally distressed, experiencing the most profound, deepest, most intest, all consuming, visceral pain I have ever experienced. The theatre staff were so kind, compassionate, understanding and allowed me to wail, my cries were almost not human. The anaesthetic was administered quickly and easily and I woke in recovery feeling warm, safe and knowing it was over. I'm still in pain, both physically and emotionally, but knowing my baby is no longer inside me is somehow a relief. It's going to take a long time to heal from this profound experience, but it can only make me stronger.