My name is Keren, and my husband is Stuart. Our son , Mali, was born on 9th November 2000. He was born by emergency c-section, and seemed to be fine.
In the early hours of the morning following Mali's birth he appeared to be breathing too fast, and was taken to the NICU at Basingstoke hospital. I didn't know what was going on, and when my husband turned up the following morning with a bottle of champagne, I dissolved into tears. This seemed to be the pattern for many days. Mali was not diagnosed for 10 days, and they were the longest days of our life. He lurched from one heart failure incident to the next and we just seemed to watch him fading away.
In the early hours of one morning, a doctor whose name I do not remember, but to whom I will forever be grateful, phoned a colleague in Southampton. This doctor happened to have been working with Wendy Taylor for a while and instantly recognised the condition.
We spent a traumatic day going down to Southampton to have the diagnosis confirmed and then going to Great Ormond Street, reaching their NICU at about 10pm.
The care we received there was so fantastic we will be forever grateful. Wendy Taylor (the saviour she appears to be) operated on Mali, embollising 3 of the 5 feeding veins to his avm. He appeared to instantly grow from strength to strength, and is now due to celebrate his 2nd birthday, with no procedures imminent.
He is a charming, happy little boy, with no problems, except he seems to be reluctant to talk much - but at 2 years we are not concerned about this!!
We have shed many, many tears during Mali's 2 years, especially in those first few weeks, and now are struggling to come to terms with what happened in those early days. We would love to talk to any parents going through this traumatic time, or to any who are 'recovering' from the experience. I know it doesn't disappear, but I know I can feel guilty that Mali is doing so well when others aren't.
Please call me on UK (0) 1256 476198
or 07898 552655
or keren.spratley@ntlworld.com
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