What we’re up to… October 13, 2024 at 10:00AM

£On this day, 13 October 2016. Things were getting worse. It was only Kai’s second day ever, and he started showing signs of edema (fluid retention) around his little face. His brain activity wasn’t normal, so they put pins in his head to measure it (when I think about how painful that must have been, I feel sick. I could have intervened, but I didn’t know that was something I could have done). He was losing all his baby reflexes, also started in oxygen… everything was going badly. The team were beginning to make noises about preparing ourselves, that he might not make it.

Still, I got to hold him, after they started the oxygen, before they put the pins in his head. I was delighted to be given the chance to hold him. The third time since he’d been born (we counted and cherished each cuddle, they were so rare in those first days). Honestly, being in NICU is a nightmare. Only two people allowed at a time, having to wait in the parent room during rounds, having to leave to eat and sleep. Being separated from your poorly baby, it’s heartbreaking. So so so heartbreaking.

This is what NKH looks like. It’s hard, and it hurts, it hurts everyone. (I’m trying so hard to hold on to the idea that it hurts because we love, but my broken heart is having a hard time with the idea of loving through the loss of this magnitude).

Kai would have been eight this week. I miss him. I miss him with every ounce of my being, and the world feels so much less without him. If you’d like to help celebrate his birthday, we’re raising donations into his memorial fund, with a long term goal that one day, children born with NKH won’t need to experience this.

Please donate £8 for his 8th birthday, if you can: https://ift.tt/SduajmI

#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh #nkhResearch #fundraising from Instagram: https://instagr.am/p/DBDvrKcC-xP/