When Death lives nearby

Once common, childhood deaths are now so rare that those raising medically fragile kids feel unmoored from their culture

“Hello darkness, my old friend.” — Simon & Garfunkel

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For millennia, humans had an intimate relationship with death. They had to. It was an ever-present reality.

It was not just that people didn’t live as long, what with their life-shortening diseases and bloodier wars.

Historical data also suggests that for most of human history, more than a quarter of infants died before their first birthday. Nearly half of all children died before puberty.

Nearly. Half. Motherhood and sorrow have long been intertwined.

In the 20th century, however, childhood death became almost nonexistent very rapidly. Much as the once-fearsome bear was turned into a Teddy Bear, death is now a plaything in our culture. Each Halloween, our cartoony celebrations poke fun at this strange and distant concept.

This is not to shame anyone for celebrating Halloween, nor do I want to get into the controversy about blue pumpkins.

But this might be the one day of the year when it’s acceptable in our culture to talk about death. Right? So, let’s talk about it. Not as a cartoon or fakery, but as a real, actual phenomenon that happens to real, actual families.

This year, the U.S. infant mortality rate is 0.56 percent. To be precise, that means more than 20,000 babies died.

According to the Centers for Disease Control and Prevention, just 0.002 percent of children ages 1-4 die in America these days and 0.001 percent of those ages 5-14. That is a far cry from the nearly half that our ancestors had to endure.

The most common cause of these very rare deaths are accidents. Unexpected, tragic, terrible, I do not want to diminish in anyway what must be an incredibly traumatic experience.

But the second- and third-most common causes of death in American children likely have another sort of trauma, the anticipatory kind. These are the children with cancer and — quoting the CDC here — “congenital malformations, deformations and chromosomal abnormalities.”

Each of those 9,173 dead children (in the last year figures were available) had two medical parents, or other caregivers, who knew, suspected or ran away from the idea that an early death was a real possibility. For months or years, the people who raised those children wondered: “Will today be the day?” until one horrible final day, it was.

“While childhood death is still relatively rare in the U.S., it is exactly that relative rarity of childhood illness that makes it more difficult for caregivers to develop best practices and best models of care…” says Dr. Craig Hurwitz in this interesting piece on developmentally appropriate approaches to pediatric palliative care.

There are no common rituals anymore, mainstream American culture does not know how to acknowledge most death, let alone child death. The grieving mothers I’ve spoken to say most people don’t bring up their dead child, as if speaking their name would somehow cause more pain, when it is actually the lack of acknowledgement that more often causes pain.

It is this reality that makes me say that many medical parents are in an unseen, unacknowledged war. For every child with cancer or a developmental disability who dies each year, there are thousands more who come close. Even many who do not die before the age of 18 have shorter life expectancies. I hear parents who struggle mightily — both with the idea that they will probably outlive their children… and with the concern that they might not.

Though around us death is treated as a cartoonish fairy tale, a relic of a bygone era, many medical parents know it is a not-so-distant fate after all.

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Medical Motherhood’s news briefs

• From the Associated Press: “Nevada using $5M in COVID-19 aid for grants to disabled kids

Up to 1,000 children with disabilities can receive $5,000 grants to use for education, transportation, housing, health care, assistive technology and other disability-related expenses, the Democratic officials said. Grants do not have to be repaid.

The governor’s office called it the first statewide grant program launched in the nation using federal coronavirus aid funding, and the largest investment into ABLE accounts in the United States.

• From Disability Scoop: “Disney Implementing Changes To Disability Access At Theme Parks

Walt Disney World visitors with disabilities can now start to take advantage of updated protocols that allow individuals to arrange disability accommodations in advance of their trip to the parks and to set up a return time for some experiences before their arrival.

• From ProPublica: “Florida Program to Aid Brain-Damaged Kids Often Told Families No. It’s Promising to Change.

Neither NICA nor the Agency for Health Care Administration, or AHCA, which administers Medicaid in Florida, would provide figures for how much Medicaid has spent over the years on children enrolled in NICA.

But an agency analysis in 2020 cast doubt on Shipley’s dire prediction. Agency records for the period from January 2009 through Sept. 20, 2017, show AHCA paid around $35.8 million to provide care through Medicaid for 122 people with NICA coverage. That equates to less than $5 million per year.

• Bonus: Disability Visibility, the book I recommended in this post, now has a version for young adults (affiliate link)! I was happy to be able to get it in my son’s preferred format, audiobook.

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