So, we got the letter in the mail today. There’s no surprise, Sam does indeed carry the c.1108C>A p.(Gln370Lys) mutation and I carry the c.395C>T p.(Ser132Leu) mutation. As expected.
If I don’t think about it too hard, we’re okay. We knew this already and onwards we go. If I do stop to think about it, I go down a bit of a tunnel.
I think about how if this had happened 50 years ago, both Kai and I would have died in childbirth (and survival of the fittest would have won out). I think about how horrific it is, that instead of something innocuous and sweet like curls, or cheekbones, Kai inherited NKH. I think about how Kai had a 75% chance of being fine, and instead, he landed in that other 25%.
It’s a dangerous path, because if I’m thinking about that, then I start thinking about the alternate life we might have lived. How curious he’d be right now, how mobile, like a little whirlwind of movement and mess making. How he’d be toddling about, holding our fingers and insisting on all the things. How social, he’d be. How he’d be able to mimic what we do and learn all the things.
It’s a bit of an effort to pull myself back, to shake off the grief of ‘what if’ and settle back into our reality.
Here’s the other thing, though. If we chose to have more kids (and I think we both would like to, eventually) Sam and I have a real chance of having another NKH baby. The consequences of this don’t need to be imagined – it happens enough in the NKH community for us to see long down the different roads of possibility.
There’s the road where your baby is affected by NKH, and you terminate, or deliver early, or at full term and avoid any extreme measures. That’s a hard hard road, of grief and sadness and pain. There’s so much hope when you’re pregnant, and it’s robbed from you with NKH. The guilt, and grief of this whole situation is rough.
There’s the other road, where you raise two NKH babies. That’s an equally hard, hard road. Again, so much grief, and pain and suffering. Just as much sadness. So much difficulty, and hardship. The guilt, and grief of this option is equally rough.
They’re both rubbish options to be fair. So you hold out hope that your baby is either a carrier or in the clear, but the difficult thing there is it’s a gamble. It’s 100% a gamble, with your life and your emotions. What a thing to gamble, hey?
No judgement from me on people who go down either track. There is so much grief associated with both, that I just, I just can’t. I can’t judge anyone, I want to wrap our entire NKH community up and in a bear hug and say no more. No more pain, or grief or suffering. We’ve already been through plenty thank you very much.
The other option is everything else. IVF with pre-implantation genetic diagnostics (which the NHS won’t pay for, btw. The cost of a typical round is £10,000. And generally, the advice given is by round THREE, 80% of parents will get a positive pregnancy test). Donor eggs or sperm with IVF. Adoption. No more children.
Some friends of ours are already thinking about their second babies. About growing their family, and they talk about it like an event that can be slotted into their calendars. When our first is maybe just past a year, we’ll try. It won’t take long, we don’t think. Our first didn’t!
Because of NKH, we could never be so light-hearted about the future of our family. So mostly I try not to think too hard about it.
I’m not super successful, to be honest. We’ll see. We’re lucky that our present is so filled with love (as soppy as it sounds) that it’s easy to stay in the present right now.