I just want him back. I’d give anything to just have him back. It feels like there will never be full resolution. He will always be missing from my life. I just miss him so deeply. The softness of his hair, him holding my hands as he nursed, the joy is his face when he looked at me, I’ll just forever miss it. It’s all so incredibly unfair. He was so perfect. He was such a good baby, clingy, but overall a really good and easy baby. He just wanted me, and as long as he had that he was fine. I know he never wanted to leave me, and if he had a choice would be here too. It’s just not fair to anyone that he’s gone. It’s just pure loss. There’s no consolation in it. His death didn’t serve some altruistic purpose.
It now feels like the other shoes has dropped finally. I sort of felt like I was holding my breath all these months, that a cause would bring closure and relief to the pain and confusion. It has and hasn’t. We now know it was isolated, but also that is was senseless. I just want him back.
I got preliminary information today that the autopsy report is done and I should have a copy soon. The initial findings are Myocarditis, likely viral triggered. It’s a very random and fast moving condition where due to viral, bacterial, or environmental triggers or infection the immune system goes haywire and attacks the cardiac muscle. There is no prevention for this condition and there is no cure. In children under the age of two it is fatal in 50-75% of cases with the leading symptom being sudden death. We suspected in the week leading up to his death that something wasn’t quite right, but even if we had figured it out the prognosis was likely grim. Heart transplant is usually the most successful method of long term treatment and we likely would not of been able to have one in time. It just moves too fast. We might have kept him for a little while longer, but would probably still have lost him. Patients under the age of 15 usually don’t fair well, but adult survivors do exists, but with long term treatment and complications leading to poor quality of life.
The good news is this is likely not to happen again, and we can feel a little better than Gabe probably has no increased risk. We do have a cardiac workup scheduled for him later this month, just to cover all our bases, and so we can be sure there is no genetic link. It was all just incredibly bad luck.
I look forward to reading the full report and tying to learn as much as I can about this condition. It’s a rare thing to occur and even more so in such a young child. It just feels like we will never be completely lucky in anything. Milo was our perfect baby. He was our happily ever after. Nothing will ever be simple or easy after losing him. Every step of our lives forward now feels tainted and put into place because of his death. Everything I had been working on or towards has been derailed. I just don’t know if I’ll ever find a level of contentment like I had with him. I’m usually not so pessimistic, but I feel like I’ve put up a good, strong front through all of this and now it’s just time to cut myself some slack and be okay with not being okay.
This is the last good smiling picture I have of him. It was taken Sept 10 – 8 days before he died. The emoji sign off I’ve been using is now even more fitting: heart, hibiscus, avocado. ❤️🌺🥑