[Content warning: This article references the unexpected death of a child.]
Lenore Alexander is a mom on a mission to save lives, and save mothers from going through what she has.
She's calling for lawmakers to make continuous postoperative monitoring mandatory after children have surgery, because she says that is what could have saved her daughter's life.
In 2002 Alexander brought her 11-year-old daughter Leah to the hospital for an elective surgery to correct a condition known as pectus carinatum, or pigeon chest.
"Every day she would get up and put on a t-shirt and be uncomfortable," Alexander recalls in a video by the Patient Safety Movement.
Doctors told Alexander surgery could correct the condition, which sees the sternum bulge out of the chest. While not life-threatening, some doctors suggest parents seek surgery for the condition in an effort to boost a child's self-esteem or help them be more active.
Alexander's daughter went in for surgery to correct her pectus carinatum on a Friday. After the operation, Leah was in a great deal of pain, according to Alexander, despite still having epidural anesthesia.
Leah, who weighed about 80 pounds, was given increasing amounts of fentanyl, a powerful opiate, her mother recalls.
"Each time I voiced my concerns, asking that the anesthesiologist responsible for her pain management be contacted, I was given the same response: She will be up and walking tomorrow," Alexander writes on her website, Leah's Legacy.
When Leah's parents refused to allow any more fentanyl, Leah was given Ativan for anxiety.
Sometime after midnight, Alexander, exhausted as any mother would be, fell asleep.
"I woke up and she was dead in the bed beside me. I later learned there was an actual term for the, 'dead in bed', " she tells Motherly via email.
She wondered why no alarms went off when Leah was deteriorating, and why her child wasn't being monitored by medical staff.
Alexander says a series of medical mistakes led to Leah's death. It turned out the epidural was misplaced, and that's why Leah was still feeling so much pain. It was the pain that led her medical providers to give her fentanyl, and then Ativan, but inexpensive electronic monitoring technology could have sounded the alarm when Leah stopped breathing.
The death of an 11-year-old is an absolute tragedy, but so too is the fact that nearly 20 years after Leah stopped breathing, there still is no law requiring continuous postoperative electronic monitoring, even in cases where pediatric patients are on powerful painkillers like opioids.
The opioid crisis America is facing is complex and multifaceted, but as the congressional effort to stop overdoses moves forward, it should be noted that not all deaths are related to opioid misuse. Some deaths can be prevented by something very simple: Continuous electronic postoperative monitoring.
Alexander's message for fellow mothers is simple: "If you're in a hospital, demand a monitor."
[Update, September 7, 2018: Added quote from Lenore Alexander]