It's the 1st December. I want to channel how I'm feeling into something positive & so would like to share a little more about what we know happened to Alexander in the hope it'll raise awareness of #sudc. I'm so grateful for the support that has given me strength to speak (1/?) 
As many know, our lovely 3 year old son Alexander died on Boxing Day 2021. He had mild tummy bug symptoms over Christmas but otherwise seemed a little under the weather, nothing more. He danced to the Masked Singer with Freddie on Christmas Day night. One of my treasured memories
Although a little tired & still with mild tummy bug symptoms, Boxing Day showed no signs of anything more serious. After falling half asleep on the couch, Alexander suddenly had a seizure and suffered a cardiac arrest. He died a mere couple of hours later despite heroic efforts
Hospital staff were completely baffled as to why this happened to him. He had had a couple of febrile seizures as a toddler (as did I as a child) but otherwise developed normally and was healthy, happy and much loved. There was no warning and it was completely devastating.
I cannot describe the pain of having to sit helplessly watching as staff desperately try and save your son, to no avail. It is something that nobody should ever have to go through and I'm sharing in the hope it might change things in future for one or more families.
I will share another time about the experience of the post mortem process and the difficulties we faced as a family because of the shortage of paediatric pathologists. But it took almost 8 months before we had the results of his post mortem, and we sat down with the paediatrician
They told us he had a hippocampul formation maldevelopment, which is sometimes associated with #sudc. He also had heart scarring on one side they couldn't explain (maybe a past seizure/maybe virus/?). Also a possible incidental find regarding a bit of genetic information.
But they couldn't tell us how much each of these things contributed to his death, individually or collectively. There just isn't enough known about #sudc or the issues that were found. To this day, devastatingly, so much is unexplained and yet we know we are lucky to have some
information, however piecemeal, as some #sudc families receive no details or indications from any investigations. It's taken me a lot of time to process what we've been told and to try and learn to live with potentially never knowing more.
But if anything can be learned from Alexander's death, I want it to happen. Research into #sudc deaths is still so limited. Knowledge of it is so limited. I had never heard of it. I want it to become preventable and predictable. For Alexander. For so many other children like him.
So if you have followed our story up until now, thank you so so much. For listening to our grief, for validating it and for letting us share our amazing Alexander with you. But please share what happened to him. Raise awareness of #sudc. So much more needs to be done.
Thank you so much to everyone who has shared my tweet. It wasn't easy to write and I hate the thought of upsetting anyone in hearing more about his death, but this is the reality for so many families. By sharing his story you honour him & his cherished siblings ❤️ #sudcawareness
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