Saturday, December 05, 2009

Million Mums - Downing Tweet Christmas Party pt 1

I am having a wonderful, although very emotional time at the moment. It has been many years since I have felt so Christmassy. This year, I am able to relax and enjoy advent and the Christmas preparations, the Christmas concerts and sitting round the table with glitter and glue because, for the for the first time in 5 years, William, Hope, Ellie and I are home together and, barring any sudden emergencies, we will be for the foreseeable future.

William had his annual review in Birmingham last week and the transplant team are really happy with him. It is becoming clear that he has "High Functioning Asperger's Syndrome". Most children with complex 'syndromes' involving numerous health and physical aspects seem to have some characteristics that place them on the autistic spectrum. This is something I will come back to in a day or two as it is interesting and deserves a blog of it's own. A quick update was needed but today's blog is really all about one very exciting thing.

I have said on a few blogs that I am a big twitter fan (where I am @Sarah_E_Milne). So much has happened for me and for the work I do to promote organ donation because of twitter. The Save Jess campaign was born out of twitter and I have met some amazing people by exchanging 'tweets'. One of those people is Sarah Brown, who tweets under the name of @SarahBrown10. I have been privileged enough to receive tweets and messages of support from her on twitter. Last week, I got a message from her asking for my address. A couple of days later I received an invitation to the 'Downing Tweet Christmas Party', a reception in support of the Million Mums Campaign. Before I go on to tell you about what an awesome time I had and all the amazing people I met, I want to take you right back to the very beginning of William's story, in fact Hope and Ellie's story too, the very beginning of my journey into Motherhood.

I have severe asthma. On the whole, this is just a pain. It makes me cough and wheeze when I walk around and can stop me doing some of the things I want to do, some days more than others. When I am pregnant, it becomes much more of an issue and actually made me critically ill and needing intensive care. I was in hospital from 26 weeks with Hope, desperately trying to get her to 32 weeks gestation when it was felt her delivery would be safe for her. I made it to 30 and for 3 days, she and I were in intensive care, our lives in the balance and my poor family not knowing which end of the hospital to be in. Thankfully, we both did amazingly well. This could have been a one off so I ventured into a second pregnancy. With Ellie, I was in hospital a bit earlier and spent time in intensive care before her birth as well as after it. She was smaller and sicker than her sister and had a few more 'premmie issues' to get through. We even had one of those horrible moments, and one I will never forget, when a doctor calls you into a counselling room and utters those sickening words "We are doing everything we can but...." Thankfully, they did everything they could and, by the end of one of the most terrifying days of my life, there was no but. William's conception was not planned but he was very much wanted from the minute I knew he was there. With Wills, I was in hospital from 24 weeks and in and out of intensive care for several long weeks. There was talk of putting me to sleep and ventilating me until he reached a viable age. There were suggestions that I should terminate - suggestions I couldn't hear of. In the end, I used a non-invasive ventilator (NIV) that delivered a full breath as I breathed in and helped me get enough oxygen to support him. On better days I managed with high flow oxygen. Again, he and I were in intensive care for several days after the birth. William needed a lot more support than his sisters as he had 'Chronic Lung Disease of Prematurity' and was on oxygen 24 hours a day for the first 15 months of his life. He has continued to need a huge amount of medical, educational and physical support since his birth. Some of these problems are likely to be because of my state in pregnancy and his premature birth, others could have happened anyway.

I, and my three children, are incredibly lucky. We had modern medicine and intensive care units with skilled staff. Without them, I wouldn't be blogging now and there would be no Hope, Ellie or William. Yesterday, I had a long chat with Jo Cox, the Director of the Maternal Mortality Campaign. She told me that 50% of the world's Mums have given birth on the floor, alone. Half of all Mums. That is an incredible statistic. Every minute of every day, a woman is dying in childbirth. 99% of these deaths happen in developing countries and almost all could have been prevented, often by an easy and inexpensive intervention. The Million Mums Campaign is working on changing this. Please visit the site and register your support. If you can, give them just a little money too. If you can afford it, give them more. I work hard to promote organ donation because, without our wonderful donor, William would not be here but, without the care I had and the children had in pregnancy and birth, our story would not have begun at all and that is why I want to do all I can to help the Million Mum's Campaign.

I was going to move on to all the exciting things that happened yesterday but, you know what. I think I'll leave you with these thoughts and come back tomorrow with the story of the reception itself. Before I tell my next story, please go here that site and help women in developing countries to have a story of Motherhood to tell.


Molly said...

I'm glad you're able to enjoy the run up to Christmas this year :) I hope you have a lovely Christmas all together as a family :D

I'm glad Wills' annual review went fine (I've got mine next week) and that the transplant team are so happy with his progress :) Sorry to hear that it looks like Wills has Asperger's Syndrome, but I hope that doesn't cause too much of a problem for him in the future. Hugs.

Glad to hear that were able to attend the Downing Tweet Christmas Party last night, it sounds like an amazing experience and for such a good cause too :) Sorry to hear that you had such a difficult time in all 3 of your pregancies Sarah, I had no idea about that.

Take care,
Moll x x

Emmie said...

So glad you had a great time and the cause sounds awesome - I'd never heard of the campaign before. As you say, it's amazing to compare the incredible medical technology and support that got you safely through 3 pregnancies with the situation for the majority of women in the third world...very eye-opening.
Loved the photo of you, Emily and Holz with Mr and Mrs Brown! xxx