Well, circumstance has brought us round to the discussion of genetics and research into HLHS again. After not speaking to our genetics doctor for so long; we decided to get in touch after being given the name of a researcher who specialised in HLHS.
Our genetics doctor is lovely and although I have spoken to her countless times but only met her once; she was confident of getting us a heart healthy baby.
A meeting is being arranged with this researcher but this morning I had an email from her regarding a study they are doing in Cambridge and it is the first time we have been asked to provide samples from me and the husband. They already have the boys there.
How do I feel? The large part of me is wanting to go for it and to find a reason or cause in my lifetime for why HLHS would occur or how or anything but then there is this tiny part of me who is saying:
"Do you really want to open that can of worms again?"
I guess it goes back to the grief path doesn't it? Am I taking a step back and for what? I know it won't bring my boys back but it might prevent another baby dying in the future. Perhaps my friend's unborn baby who has been antenatally diagnosed with HLHS? Maybe baby Seren wouldn't have died? So selfishly I may ponder if it is the right step forward but I cannot 'not' do anything. What if Princess was to have a heart baby in the future and me opting out now may have prevented it?
But then what if her DNA would also be beneficial to the study, in particular of our family? I know I am probably jumping the gun and thinking too far ahead but it's not just about me and the husband now. It's the whole family - like if we did have another baby; it's not us on the journey and selfishly worrying about the unborn child. Could we face it for her?
It's taken 3 years to get this far with trying to get some action on the genetics route and I know it is a needle in a haystack and I wish more was put into the research of CHDs as there was cancer. I mean cancer is horrid and I don't wish it on anyone nor do I wish a CHD on anyone but if there was more public awareness and more research then there would be a greater understanding.
Plus I think it still freaks me out that a part of my boys is in a lab a few miles away from me. I know it's not 'them' but the concept of them still being there is weird, well I guess I am weird.
When will there be a right answer to all of this?
