News & Events

Worth the wait?

Last Reviewed 18/11/2016

By swan uk member and blogger, Berkshire girl - berkshiregirl30.wordpress.com

Here we are almost six years into our journey with a special needs child and we still don’t know why! Why does he have such a huge range of medical issues? Why does my baby get so many infections? Why do we have to learn so much about medical procedures and medicine side effects? We just do not know. YET!

We might be able to find out in a year and who knows? A suggestion from our lovely genetics team recently seems plausible. Not certain and may not be for a year or more but it's possible he does have this rare genetic condition (as far as we know he has most of the symptoms) that is so newly found there’s almost no data on it. That means nothing for me to research, I do love researching things on my friend Mr Google!

This possible year of waiting has made me wonder why I even want to know. Why am I so sure we need a diagnosis? Is it really worth it? I do believe it is, mostly for my peace of mind but also to help our little Cub in the future and my girls might need to know, if they plan to have to children and need any tests. Hopefully not ‘screening out’ as several countries have seen with new Down's Syndrome screening. I mean for preparation in case they have a gene that causes problems during pregnancy or serious medical problems.

Part of our testing is to test myself and R’s blood for anything genetic too. This could show up anything we may have in our genes too. The whole thing fascinates me, it’s amazing the technology is there for these things.

But still while we wait for results it’s a double-edged sword. Knowing vs not knowing? Knowledge is power as they say and I’m sure it’s true but it also brings so much responsibility.

Until we find out (if we ever do) we will always wonder what if? Could Cubs problems have been avoided? Do the girls have a risk of having a child like Cub if they have children?

While we wait Cub will be a SWAN (syndrome without a name) Watch this space!

Berkshire Girl🙂 x

As published at: berkshiregirl30.wordpress.com

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