This time last month I was anxiously waiting for news about Jess. I knew things had got a lot worse. I knew she was dying but I still hoped. I still hoped she would defy the experts and show some signs of improvement, even when all looked so bleak. I hoped right up until I received the text from her Mum telling me she had passed away.
I whiled away my time waiting news about Jess switching between facebook and twitter, keeping in touch with mutual friends, all equally unsettled and sad. My attention was caught by 'Haiti' in the twitter trending topics. In September, I photographed a 10K run a friend of mine organised to raise money The Haiti Hospital Appeal and, while there, chatted with one of the trustees about writing a feature about their work sometime. I clicked to find out why Haiti was trending and, finding tweets about the quake, switched on BBC News 24 to watch it unfold. About 15 minutes later, I received the news about Jess and my attention was diverted.
I'm currently halfway through a piece about the Haiti Hospital Appeal and it's the most humbling piece I've ever written. I've heard some amazing stories and it's something I can't just leave alone. I'll be following Haiti and the work of the appeal through the years to come and supporting and highlighting their work and the plight of that little country that was already broken before the quake struck. One in five children already died before the age of five due to birth defects caused by the fact that 75% of their mothers give birth alone with no access to healthcare. Thousands of children are disabled from birth, many of whom end up abandoned by parents who are unable to juggle their needs with the daily task of finding work to earn enough money to get food and water for another day. This was what Haiti was like before the quake. Haitians are used to injustice. They are used to having to get on and find food and water alone because aid from the rest of the world is scarce. This was life for them before the quake and this has made them a resilient nation. I have been told stories about individuals who lost several members of their family, their home and belongings and still came to work the next day. They did that because they had to. If they didn't, they wouldn't eat or drink. It's as simple as that. Just was I was clinging onto hope the night Jess died, so the Haitians live in hope that more aid will come and that the world will walk alongside them and will stay with them as they rebuild their country. The Haiti Hospital Appeal is bringing that hope to many. I'll bring you more stories over the coming weeks.
The Hospital the appeal funds is supposed to be a maternity hospital with a special care baby unit and paediatric ward. At the moment, the facilities are being put to use for all who need it but, in the long term, the hospital will focus on maternal and paediatric care. This is something that is very close to my heart as a mum who struggled with difficult pregnancies, resulting in 3 premature babies. Hope is all you have when your tiny, two pound, baby is born with lungs too immature to breath. Hope and trust that the medical team can offer the support until the infant matures enough to cope without high tech machines and specialist drugs. I find it so sad to think of the thousands of women all over the world who give birth to a fragile baby without any hope at all for their survival.
Today, I read the very moving piece in The Guardian outlining Gordon Brown's interview with Piers Morgan about losing he and Sarah's precious little Jennifer Jane. I read the piece with tears in my eyes. I have been so, so lucky. I was told about the danger of cerebral bleeds for premature infants. Twice a week, until they reached 34 weeks gestation, Hope, Ellie and William had head scans looking for any sign of bleeding. These were among the most stressful days for me when they were tiny. I remember vividly the anxiety waiting for the result and the huge sense of relief another week had taken us closer the the magic 34 without a bleed that could result in severe brain damage or death. For Ellie, this was even more of a worry as she had to have a drug to close a valve in her heart that had failed to close as she was born. The side effect was to drastically increase the risk of bleeding. Gordon's re-telling of the day he realised Jennifer was not going to survive struck a cord with me. I remember watching William get weaker and his need for more support from oxygen grow each day and just feeling this huge sense of intuition that he was in real trouble and wouldn't make it. I wasn't brave enough to question staff but was soon told of their own concern when he was transferred back into intensive care and onto breathing support. We were lucky that he was able to fight back. We were lucky that we live in a country that was able to provide specialist medical care and nutrition to carry him through the years before his transplant. We were lucky that our wonderful donor family said yes on another of the several days in his life that we have come terrifyingly close to losing him. So, so lucky. I hug my children every day and remember that. My heart goes out to Sarah and Gordon and others, among whom are many of my friends, who have lost a child.
It's not enough for me to just sit here feeling lucky though. I have to do something to help those that are not so fortunate. After William was born I went to work at BLISS, the premature baby charity because I wanted to make a difference for mums who had premature and sick babies and may not have been as lucky as I'd been with my three children. As he became sicker, I had to give up this job to look after him and live in hospital with him. Since his transplant, I have been campaigning for more organ donors and I know we are making a difference and saving lives and I will continue to do this. This work helps others to be able to enjoy the successful transplant story we have to tell but, as I have said in this blog before, our story didn't start there. It's fantastic that I'm now using my writing and journalism to highlight stories of mums and children who are not lucky simply because they were born in a country where there are no specialist medical teams, drugs and machinery to help them. It's a little contribution but it is something.
The more I research this, the more involved I want to be. Hope is also becoming very interested in this. She is about to take her GCSE options and thinking about a career based around her favourite subjects - geography and history, and her desire to work to make a difference for people. Today, we talked about working in third world development and she was really taken with the idea. She's hoping to do her work experience next year with a relevant charity or aid agency. If she does go down this route, how fitting that a little girl who is only alive because she was able to be placed on a ventilator as soon as she was born could one day be working to help other babies have the right to the same.
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