Tuesday 12 May 2009

a day of remembering..... (This is a long post, sorry!)


Tomorrow is Pickles third birthday. I'm really looking forward to celebrating with her. I'm so glad to have been given these past three years with such a wonderful little girl. It could have been so different. According to statistics and my consultant, we shouldn't be here.

During my labour with Pickle, I had an extremely rare and usually fatal condition called an Amniotic Fluid Embolism. It's also sometimes described as an Anaphylactic Syndrome of pregnancy. In a nutshell, some cells from the amniotic fluid enter the mothers bloodstream and the body has a violent reaction, shutting down the major organs and losing all clotting factor, which results in massive haemorrhage. I can't remember much about the labour and have no recollection of Pickle being born. Since then, I have a brief 10 minute or so patch of memory that has come back to me. I can remember being in the theatre as they tried to find out what was going on. I knew that I was dying, I can't tell you how, but I did, and the midwives wouldn't answer me if I asked them if I would be OK. My husband was with me at that time and I remember having an overwhelming need to tell him that I loved him, to let him know, because it might be the last thing he heard me say. I can remember the blood flowing out of me with each heartbeat, for it was at this time that my clotting factor had gone. They decided to put me under and I remember shouting desperately out to my husband that I loved him.

I woke in ITU on a ventilator, confused, in a lot of pain, with no memory of what had happened and not realising that my baby had been born. I had been in surgery for nearly seven hours, received over 25 units of blood and products and had been resuscitated once. My surgeon had not thought that I would survive , he told me later, and neither had my poor husband, who faced the possibility of being a widower, with four children under 7. He was the one who had spent the day at the hospital with his newborn daughter, who had given her her first feed, never letting her go, but who had left late that evening without his wife or his baby.

I was in hospital for nearly two weeks, and went back in two weeks later in for another week with a suspected blood clot. When I came home, I went into a tailspin. I needed, wanted to make sense of it all, but couldn't. I asked myself constantly why I survived, and became dissatisfied with all that I had. I thought that if I had died, what legacy would I have left? What would I have achieved? I got really cross with the kind of magazine articles that said ' I faced death and now I live every second of every day', because for me it felt like my life had been thrown into the air and scattered all around. Besides this, I was battling health issues and Post Traumatic Stress that arose as a result of the AFE, and trying to be a mum to four small ones.

I did calm down eventually, my husband was a rock and didn't waver, no matter what I threw at him. I am so grateful for that. My life has changed. I have battled with ME for the past two years, though that particular battle seems to be mostly won. I also was left with some brain damage, affecting my short term memory and word retrieval, but have found ways to cope with that and it's usually only apparent when I'm tired.

The last three years have been hard, stripping away all that I used to value, all that I used to identify myself by. I used to be someone always on the go, always busy, usually out with friends. Many people have fallen away as I have had to turn down many invitations and for a long time could only manage a short period of activity each day, usually the school run! but because of this, I rediscovered my love of crafting, found what it was like to just sit and do nothing, and have discovered dear and true friends. Things are better, are getting better every day, they will never be as they were before, but that's OK.

I think our family can get through anything now. The children are aware of mummy's tiredness and broken brain (- their words, not mine!) and sometimes I do feel guilty that we haven't done all the days out and activities that others have done, but that will come. They are used to me spending a lot of time in bed, though hopefully that will continue to get less and less, and it's just another place to gather and chat!

So tomorrow is a day of celebration, my precious little girl survived too and though there are concerns, I am blessed. I will save the sadness that sometimes comes, till after she is in bed and 'her' day is over and will remind myself of just how lucky I am.

Here is a link for someone else who describes the experience much better than I can...

5 comments:

  1. Wow, what an amazing story. I can't imagine how traumatic all of this has been for your family, you're amazing :)

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  2. That was an incredibly powerful post. Thank you for writing it, and I hope all is now well for your family.

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  3. Gosh, what a huge trauma to have to live through. I admire you enormously - both for having lived it, and having written about it so well and movingly.

    I have never posted about the specifics of the illness with which I live, but it is ME. I have had it for over 20 years, so am really pleased to hear that after 2 you are much better. I know all about the resting, the getting words mixed up when tired. When I say the wrong words my kids just say 'are you tired Mummy?'

    Happy Birthday to your little girl for tomorrow. And a big (((hug))) for you. Your children are lucky to have you, and I'm sure your husband is thankful for you, ever day.

    x

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  4. Wow, what an awful, unimaginable thing for you all to go through. I confess I had never heard of this condition before but you have written so eloquently about your experience. An amazing post. Happy Birthday to your little girl.

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  5. A very Happy Birthday to your little girl. Must have been very difficult to type this post. You have certainly had more than your share of things to deal. I had complications at 29 weeks that landed me in hospital for 5 weeks. The pendulum swung in my favour in the end and we are both grateful for our daughter who is now 6. Your hubby must be a special man, in fact, a very special family. Enjoy her big day.XX

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