Sunday, 24 July 2011

The SUDC Program

Literally within days after Patrick's death we were contacted by someone through Facebook. This lady living in the UK had somehow read about Patrick in the online papers and made contact to let us know that something similar had happened to her and that there was help out there. She gave us the link the SUDC Program in the US.

The SUDC Program assist parents all over the world whose toddlers and older children have died suddenly. They are a wonderful group of people who are always there for you; following up with phone calls, e-mails, cards on special occasions - you name it, they do it. They also focus heavily on research into SUDC.

Before we became aware of the SUDC Program, Patrick's death had been put down by us and others as some sort of a cot death...though toddlers his age do not just die of cot death, or do they? It did not make sense. We had done everything right to minimise any risk when he was small. So why did this happen?

Looking at the SUDC website suddenly made us realise that, while extremely rare, there is this thing that takes seemingly healthy young toddlers and even older children and leaves them dead for apparently no reason. It makes for a chilling revelation. Before, we had never even known this existed. Now we know of people who lost children as old as over 10 in the same way we lost Patrick. Some even passed away sitting on the couch watching TV - they were not even asleep!!! Responsive one second and gone the next. While most cases do happen between 1 and 3, this would make any parent pale with freight.

This just confirmed what I had felt about Patrick's case - once this process starts, it cannot be halted or its final outcome prevented - no matter how quickly help appears. So while we were still waiting for the official post mortem results, I came to the conclusion in my own head, there just was no way of predicting or preventing this. Ergo...no-one could have seen this coming.

Whenever we see a new family being welcomed to the SUDC support forums, older members extend their sympathies and say how this was a club that nobody wants to be part of but that they will find a lot of support and understanding there - and they are correct. This club chooses you. You do not get a choice. But the people of the SUDC Program and the other parents make the journey a little less daunting with their help, advice and kindness.

There are marvellous fund-raising efforts especially in the US to help support the research branch. I guess we are all united in the hope that some day they get to find out what causes this and maybe even how to prevent it or how to be able to spot the signs.

We submitted Patrick's case to the research program and donated a small amount to it also. We hope that having his details added to the database, they eventually begin to make some breakthroughs. They have already noticed that a lot of the cases seem to have certain things in common - such as a history of febrile seizures. This is not the case for Patrick as far as we are aware though but it is a start.

The SUDC people have proven to be a source of tremendous support to us over the last 26 weeks and we are grateful for having been pointed to them so early on in our journey through this. They deserve a lot of credit for their work and we will never forget their kindness and support during this so very difficult time.

No comments:

Post a Comment