It has been 11 years since the day I found my 11-year-old daughter Leah, dead next to me in her hospital bed. And though I haven’t spent those years attending medical school, I do now have a much better understanding of what happened during the 30 hours my child was in the hospital than I did 11 years ago when my nightmare started. It was a “ perfect storm “ of mistakes and miscommunication.
I am writing this today, as a 55 year old woman who has lived every one of the 4015 days since feeling responsible for my daughter’s death in my heart and on my conscience.
I know I will win the battle to make electronic monitoring mandatory for all patients on opioids. I know this because I know I will not give up. And because many medical professionals agree that monitoring should be the standard. But the battle within myself, over how I failed my baby, that battle continues.
Over the years, there have been moments of comfort, moments when the logical Lenore could tell the mommy in me that it wasn’t her responsibility. There was a nurse I encountered at another hospital who happened to be in the room the night Leah died: “We all knew they killed that beautiful child,” she told me. And there’ve been doctors I’ve worked with in my advocacy who, looking at Leah’s chart, have found it unbelievable there was no effective accountability. In these moments there is some relief for me.
But the larger truth is that when you bring your child to the hospital, and stay with her every minute only to have her die next to you, it’s a nightmare. And when this happens and everyone involved insists no mistakes were made – “an unusual reaction to medicine,” “an undetected heart problem” (neither of which was found in autopsy) – it is left to the mother, me, to be the one responsible for not being able to save her baby.
No amount of money would have made Leah’s death less awful. I have said, if morality ruled the courts, the people responsible would have been morally expected to take care of Leahs two sisters. Her death changed their lives drastically. But it doesn’t work that way.
What might have helped? First, telling me the whole truth. Admitting what happened. Making an apology. And giving me the ability to breathe without this weight on my heart for the rest of my life. Little to ask, it seems, for all they took.
And then I want them to help me; to work with me and others like me; to use my experience, my advocacy and my total commitment to together prevent one more family from having their lives ripped apart by the needless loss of a beloved child.
I will work with anybody. And I am ready tomorrow.
Executive Director, Leahslegacy.org