Trisomy 18 is a terrible disease. It steals children from their parents far before they are ready. It leads to heart problems, airway problems, gastrointestinal problems, neurological problems. It affects every system of the body. It is a nightmare.
There have been so many losses recently. Every time I get on the trisomy boards on Facebook, another sweet angel has left this world. Last night, a sweet trisomy 18 baby boy died. He was 16 months old. He needed emergency surgery, and he did not recover once extubated. Another mother gave birth to twins – one with T18. He did not survive the night. Clara is currently on life support, fighting severe pneumonia. I read these stories, and I want to give up. This disease always wins and it usually seems to win early on in life.
Perhaps the boards has skewed my perception of the syndrome some. Perhaps it has changed the way I felt about James’ path. I thought we would do everything in his best interest to keep him alive, keep him going. Now I realize that what is in his best interest is not what any parent wants to consider – that it might be ok to NOT do everything that we can. As a veterinarian, I always say – just because we can doesn’t mean that we should. How true those words are ringing to me now.
I watch him fight heart failure and a fever and I know that I can’t make him fight his whole life. I don’t want him to fight his whole life. I don’t want his life to be surgeries and hospitalizations and medications and strangers poking him with needles and IVs and hooking him up to machines. Even if that bought him happy days, would it be worth it? Every trisomy mother has to ask themselves this question and decide. It is a heartrending set of decisions.
The beauty of life is not measured in its length. Not for James. It is for his father and me, as we would love him to stay here with us forever, safely nestled in our arms. But for him, life is moment to moment. We want the moments that he has to be free of as much pain as possible, and for him to be at home with his family – letting his sisters hold him, snuggle him, being there for family reading time at night, having him sleeping next to me at night instead of in an incubator.
It is such a painful decision – choosing hospice, choosing to forego aggressive care, but we genuinely feel like it is the best thing for our sweet boy. If love could fix him, he would be healed one thousand times over, but it can’t. Our love can only guide us to make the decisions that we think are best for him, as utterly gut-wrenching as those decisions are. Our love can witness his little life, cherish it, and when it comes to the end, surround him in his last moments.
My heart is breaking.