Now its been a little over a year since we recieved Noah’s post mortem results and up until I just haven’t had the words to write about it. So let me recap a little.
We waited 9 months. Yes 9 long and very difficult months until we discovered what was behind our sons death. In those 9 months its safe to say I went stir crazy, the questions just kept spinning out of control in my head and I had come to the conclusion that somehow his death was my fault. We called numerous amounts of times only to be told “I’m really sorry, we understand how difficult it must be but these things can’t be rushed” or “I’m sorry its just so busy we have so many people waiting on results right now” (like thats supposed to make us feel any better). Obviously I knew it wasn’t their fault it was taking so long, they had to be thorough but it didn’t end my frustration, I needed to know.
I was in work when I got the call, how I managed to continue with my shift I don’t know. Its funny now I think about it, we were both in the exact same hospital on different ends of the phone at the same time. I wanted nothing more than to head over to her there and then and have the meeting. There are rules to abide by and that wasn’t possible, obviously.
The meeting was scheduled for a few days time. We were finally going to find out what had happened. But what if I dont want to? What if it was my fault? What if he could have been saved? What if they dont find a reason? For 9 months we had begged for this day to come and now it was here I didn’t want it. Then it hit me. The results of the post mortem was the very last thing left, this was the final chapter of his story and I wasn’t prepared to hear it. What parent would be? It was too much for anyone to bare.
Friday 4th October 2019, we got up got dressed and made our way to the hospital. It wasn’t my first time back there since leaving without Noah, I work there but it was the first time I had to go to that part of the hospital. It felt surreal, like it wasn’t real. How were we about to sit down and have a conversation about how and why our child died?
“There is a reason” the consultant said as we sat down in the chair opposite her before even opening the pages. I was somewhat relieved, until we dove deeper into it. “Your son had a disease called very long chain acyl-coa dehydrogenase disease or VLCADD for short”. In short, VLCADD is a genetic metabolic disease which prevents the breakdown of long chain fats (I will go into depth one day on this and the rippling affect this has had on our family). We went through all of the gruesome and scientific bits that come with a post mortem and I couldn’t help but invisige his little body lying there cold. She made it sound as if his death was inevitable, that with this disease there was no way you could survive. Having had my thriving 6 year old recently diagnosed with this too we now know that that is absolutely not true.
“We hope it brings you comfort” they said after describing our sons failed resuscitation, death, post mortem and telling us that we have a 1 in 4 chance of passing this disease on with every pregnancy. I couldn’t help but laugh inside, I know they meant no harm but seriously how is any of that comforting? None of that brings him back, nor does it make me feel any better that he died. If anything knowing we have a 1 in 4 chance had just shat all over our hopes and dreams of having another baby. What if we pass it on again? What if we already passed it Oliver? Adding those questions to my mind had not been comforting. And to be honest what ever the reason for his death would never have been good enough.
The days after the meeting are a bit of blur. I took some time off work and tried to “process” but I honestly didn’t really have a clue what I was actually processing. “We’ll know more when we meet the genetics team” I just kept telling myself. I googled everything but since its extremely rare there wasn’t an awful lot I could find and the only bits of reading that I could were absolutely devastating. I even tried to find a community but the only page I stumbled across stated “NO NEGATIVE OUTCOMES” in the description so I gave up and decided to deal with it alone.
I then had to find a way to tell my pregnant sister that Noah’s death was genetic and she too could be a carrier and, yes although her husband would have to be a carrier too which is rare it’s something she too could pass on. I didn’t know how, I didn’t want to scare her but I had to. She needed to know. I hated pregnant people at this point but I didn’t even think about how I was feeling I just felt empathy towards how this news would affect my heavily pregnant sister. She was okay, anxious obviously but we were told it was so rare that it would hugely unlikely for her baby to be unaffected and they were right my nephew is now a year old and absolutely fine!
I still don’t think I’ve fully come to terms with it, even now. Yes I’ve accepted that he had died but the what ifs thud around my head on a daily basis. What if we had known? What if he had no infection markers on his lungs? What if I hadn’t tried to breastfeed? What if he wasn’t 15 days late? Honestly, I could go on forever. I try not to delve into them a too often or I don’t think I will come back from it but I know they’ll never leave me and neither will my Noah. Maybe I will never fully process or come to terms with his death and maybe that is okay. If I do I’ll be sure to let you know the secret.
Searching for the light 