By Lenore Alexander (Executive Director, leahslegacy.org)
Eleven years ago, I found my 11-year-old daughter, Leah, dead next to me in her hospital bed. And though I haven’t spent this time attending medical school, I now have a much better understanding of what happened during the 30 hours my child was in the hospital’s care. It’s what’s come to be called a “perfect storm” – a cascade of mistakes and miscommunication.
I am writing this today, as a 55-year-old woman who has lived each one of the 4015 days since my daughter’s death feeling responsible in my heart and on my conscience.
Leah was in the hospital for elective surgery to correct a fairly common developmental condition called pectus carinatum; an overgrowth of cartilage was causing a protrusion of her chest. Although the surgery was successful, she was in considerable pain after it. And so the dosage of the narcotic – fentanyl – she was receiving through a spinal epidural was repeatedly increased.
By the second night, she could no longer hold her head up. And still the pain persisted. A resident called it “anxiety,” and – pushing past our expressions of concern – ordered that 2mg of ativan be added to the mix.
I had been awake continuously for 30 hours. For two hours, at one o’clock on the second night, I fell asleep. When I awoke, my daughter was dead in bed alongside me.
The autopsy revealed that Leah’s epidural had been inserted in the wrong place. Instead of infusing the epidural space in Leah’s spine, the fentanyl was filling the left lung intrapleural space. Until the autopsy – and despite the repeated complaints of pain – no one had thought to check if the epidural had been placed correctly.
And – despite repeatedly upping the narcotics – no one had ordered even the simplest electronic monitoring device. Standard of care was – and still is – a 2-4 hour visual check; the last nurse to see her did so from the door.
Very likely, the alarm of a monitor would have alerted staff to Leah’s declining condition and saved her life.
And so now I fight to make electronic monitoring mandatory of all patients on opioids. I know we will win this battle. I know it because I know I will not give up. And because many, many medical professionals agree. 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’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. And there was a nurse I later encountered at another hospital who happened to have been in the room the night Leah died: “We all knew,” she told me, “that they killed that beautiful child.”
Here’s how: A list that a clinical nursing consultant compiled:
Lack of any type of monitoring device, such as a pulse oximetry for oxygenation or capnography for adequacy of ventilation.
Lack of any in-depth assessment of the patient.
Lack of verification of epidural placement of the catheter.
Lack of nurses with adequate knowledge of opioid sedation.
Lack of intervention or assessment by a certified pharmacist who could have questioned the increasing dosing of fentanyl.
Lack of identifiable hands off communication of nurses or evidence drug administered was double checked by another healthcare professional.
Lack of concern by physicians and caregivers (a pediatric patient needing three adults to walk to the bathroom and barely holding up her head is surely a clear cut sign she was overdosed with Fentanyl and use of the Ativan).
Lack of assessment of drug-to-drug interactions (do competent physicians prescribe Ativan knowing there have been increasing doses of Fentanyl?).
Lack of night shift monitoring after change of shift- 2 nurses should round on all the patients.
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 Leah’s 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. That might give 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.
The mother of Leah Coufal, Lenore Alexander is Executive Director of Leah’s Legacy, a non-profit advocate for mandatory electronic monitoring of patients on opioids. She may be reached at alexander@leahslegacy.org
Tragic. How can it be that people that lose loved ones to medical errors are the ones fighting hardest to bring about changes that save other patients lives? Why aren’t the hospitals and healthcare workers doing this? Maybe because they cannot fix what they will not acknowledge. Thank you Lenore Alexander for working to save lives.
As painful to read as when it happened. Leahs Leagacy will save others through your hard work and determination.
Parents, consumers, health care professionals and legilsators need to work as partners with inspirational people like Lenore to improve safety for patients like Leah .
The most effective way to change clinical practice is by combining personal evidence from stories like Leah and Lenore’s – with evidence from rigorously conducted randomised trials and other studies, endorsed by professional guidelines and state legislation.
A good example is the story of pulse oximetry screening for critical congenital heart disease before discharge from hospital. Using a pulse oximeter machine, newborn babies can have their blood oxygen saturation checked in the arms and legs before they go home.
Carefully conducted cohort studies in many thousands of babies showed that this simple, painless procedure identifies babies with low oxygen saturation because of unsuspected heart disease, so that they can get lifesaving surgery before they collapse, preventing hundreds of avoidable deaths every year.
That evidence, plus powerful lobbying by parents of affected babies, led the US Secretary of State for Health and Human Services to make this simple screening procedure mandatory in all US federal hospitals.
Equipping and educating parents, consumers, clinicians and legislators as partners to find and put reliable evidence into practice will accelerate this process in other fields, like monitoring patients on opiates after surgery.
I wish Lenore and her supporters every encouragement in their goal of achieving rapid, evidence-based change to prevent opiate-related post operative deaths in California, every state in the US and, ultimately, worldwide.