Wednesday, 30 October 2013

The big day

Today was a very important day in my journey with my promise to Harry.

My promise to Harry was to keep his memory alive by helping others. Part of that promise was to make sure fewer babies lose their lives to vasa Praevia, by raising awareness and trying to get somewhere with a routine screening programme nationally.

If you read back in my blog to "Hospital Debrief" you can read about the first time I realised that what caused Harry's death could be screened for.

Since then I have been on a journey. Many media opportunities and many letters and phone calls with various bodies has bought me to today. A meeting with the UK's National Screening Committee. They have conducted a review on vasa Praevia and whether or not a universal screening programme should be ruled out.

Well they have decided a universal screening programme right now is not applicable as there isn't enough evidence in the identifying, and monitoring areas as it is such a rare condition. However today they have decided to bring about screening the "at risk" women.

I was so nervous ahead of the meeting, knowing there would be representatives from the Department of Health, the Royal College of Obs & Gynaes, the Royal College of Midwives etc. I felt truly honoured to be in the room today listening to professionals who want to make a difference and see the lives of little babies saved.

I didn't contribute much to the meeting as I do not hold any medical training or indeed do I know enough statistically about the condition to put up a massive argument with someone who truly knows their stuff. But to listen and be a part of a change was humbling. My son Harry has bought this passion to me, to give those babies a voice and to stop them dying needlessly.

I kept thinking about Harry and how if someone had only taken then time to diagnose him then I wouldn't be there in that meeting. I would be at home with my two boys. He would be big now. He would be having so much fun. But doing all this good has made me so happy, and fulfilled. Would I be happy if life had been so different? Who knows.

The screening committee has taken small steps today and I am very proud of our journey. But I want to thank everyone who has been on this journey with me. I have been very lucky to have massive support, on FaceBook and in "real life". This journey has bought new people into my life and made relationships closer, and shown me some new wonderful friends. Thank you everyone who has and still are part of "Harry's Army" helping me to raise awareness of this dreadful condition and make a difference to other families.

And those of you who helped me find my confidence when I needed it most over the last few days. Thank you. You're amazing xxx

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