Ask most parents what they would tolerate as an acceptable risk of death for their child and most would say 0%. Accepting even the smallest margin of risk that results in our child dying, is too much to bare. Sure, we know there are risks with everything: <1% death after dental surgery; 1 in 1000 deaths after a GI scope; 34% risk of sexual harassment for girls in their lifetime; 3% chance of getting struck by a car. Risk is a part of life.

But what if you knew the exact probability of your child’s death? Would it change how you walked in the world? Would it change how you parent your child? How you spend your time? Could you get through mundane daily chores?

Red’s probability of death is somewhere between 22-46%. There are many variables factoring into this risk: she’s statistically small on the normal growth chart hovering in the 10th percentile; she has stage 3 kidney disease that will progress to renal failure over the next 8-15 years; she has a rare genetic mutation destabilizing any certainty of calculating accurate outcomes of lifespan; she is prone to chronic viral infections; she has a PDA heart condition; her peritoneal cavity was comprised in a botched surgery leaving the probability of the most successful type of dialysis (peritoneal dialysis) too risky and thus, will likely need hemodialysis which renders less successful survival rates, especially in small children; she’s g-tube fed with has an increase co-morbidity with dialysis; if she bypasses dialysis she increases her chances of survival greatly, by having a transplant before the wear and tear on her body takes toll from invasive dialysis treatment; she’s had pieces of her colon removed; her stomach has been ripped open by a misplaced g-tube and in general, she’s unlucky (because luck does play into this calculation).

In the end, I’ve calculated Red’s probability of death over the next 10 years to range from 22% if all stars align and no complications exist, to 46% if things don’t go our way.

I walk around every day, knowing that my child has a 22-46% chance of death before I’ll even meet my own (statistically speaking). This number is always in my mental scripts. It’s with me at the grocery store, when I sneak into her room to wake her in the morning, on birthdays when she blows out her candles … instead of wondering what her little brain is thinking I wonder how many more birthdays we have with her. Sometimes this number takes my breath away and I freeze, when I see her laugh and play. Other days, I’m not cognizant of her probable death in any way. We just live and it’s nice.

The biggest challenge has always been living with this number. Letting it be a part of our family. Managing all the fear and anger that it brings. But it has changed the way we approach life, parenting, each other, big decisions. On bad days I look at her and think, there is nearly a half and half chance that you’ll see your 18th birthday — but overall, the monotonous chirping of every day problems is reduced to white noise. I see a bit clearer. Moments with my children seem prolongs, almost in slow motion. I think this is why photography has helped change my view of the world and parenting. I want to capture it all. Every face, every pleasure and yes, every pain. I want to document everything. Just in case it’s all I have left.

There are parents who walk with the absolutely certainty that their child will die. 100% chance of death. A fatal rare disease. A medieval ailment. Parenting a dying child is a grief I can imagine but feels impossible. Parenting a living/well enough/progressively sick child with 22-46% mortality rate feels like preparing for life and death at the same time. I’m straddling two very different worlds, preparing myself for two very different outcomes and it’s exhausting, it’s haunting, it’s tragic, it’s every day and it’s so god damn poetic and beautiful, isn’t it?


3 thoughts on “22-46%

  1. Wow! I don’t even really know what to say. I can’t even imagine…………………..You are an amazing woman and your beautiful, precious little girl is so very lucky to have you as her mother. I wish you all the “best” on this uncertain and difficult journey. HUGS!

  2. No thanks needed. Your journey has really touched my heart and makes me really stop and look at mine. I always say, yes it could be worse, and this just really reminded me of that and I should maybe really try to have a better attitude towards mine. She’s just a baby and life really just is NOT fair sometimes. This is a life journey that I have read here at wordpress that I will NEVER forget. You, your precious little girl, Red, and your family will forever be in my heart and prayers. You are the strongest, most courageous woman and don’t you ever forget that. I truly mean it when I say she is very lucky to have you as her “mommy” and the other way around, as well. I mean that second part in a good way. I think you know what I mean. God chose you to be Reds mommy for a reason. Thinking of you, always. Thanks for sharing your journey. It really has opened my eyes, for sure. Take care and God bless. I’ll continue to follow and pray. HUGS………………………………………..
    Sunshine and more HUGS, please give Red a HUG from me.

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