The grief of losing a child is the most unbearable, heart-wrenching experience a parent can imagine. In addition to the emotional recovery, there are also the many loose ends that need to be tied up shortly after a child’s passing — the canceling of doctor’s appointments and health insurance plans, the deactivation of personal accounts, and even notifying government agencies of the death. All of this has to get done somehow, in the midst of trying to manage an unimaginable loss.
How does a parent keep it together, dealing with the unrelenting pain of losing a child, while simultaneously making phone calls, sending emails, and signing all those dotted lines? It’s easy to assume that government institutions and professional companies use discretion and sensitivity when dealing with such matters. But what many would consider common sense isn’t always the norm.
Amanda Prested Batterbee unfortunately learned this the hard way after receiving a disturbing letter from the government. She tragically lost her 12-year-old son Reece on October 18, 2016, after a nearly six-year health struggle with an unknown progressive neurodegenerative disorder. Batterbee, who lives in Colorado, tells Babble did everything she could to save her son’s life; but after several years of hospital visits, extensive testing, and treatment plans, Reece entered a hospice program and began declining rapidly before he lost his battle.
While the grieving process was complicated, Batterbee — a self-employed nurse practitioner who is also mother to a little girl — was forced to return to work after a few weeks because of financial burdens. Not only did Batterbee have $20,000 worth of debt incurred by Reece’s hospital and medical bills, but she was receiving daily letters from debt collectors and attorneys. She has even made three separate court appearances due to lawsuits against her for outstanding debts.
The day after Reece passed, she contacted his nurse case manager from Medicaid to notify her. She was local and they had kept monthly contact with her to keep her up-to-date with Reece’s current symptoms. She was very empathetic and sad to hear the news, but a few months later, the grieving mother received a letter from Medicaid with a very different tone.
“Dear parent/guardian of Reece Batterbee,” it read, according to Batterbee. “We are notifying you that your child is no longer eligible for services as the dependent is deceased.”
While there was no debating the information in the letter, there was no “sorry for your loss,” words of condolences, or any other personal messages. Just the cold, hard, and painful facts.
“Reading that took my breath away for a second,” Batterbee tells Babble. “In one sentence they effectively reduced Reece to an inhuman statistic.”
Batterbee also brings up the fact that to most __parents of children with terminal illnesses, the cost of medical care is a huge concern.
“It would have been so much more comforting to have a letter that acknowledged the loss and even something that said medical claims will continue to be processed and paid for dates of service up to October 18,” she says.
But it didn’t.
And sadly, this wasn’t the first uncomfortable bureaucratic situation Batterbee had to deal with following her son’s death. Shortly after Reece passed, Batterbee attempted to reclaim the money that was leftover in her son’s Pay-For-It account — a third-party system her school district uses to manage funds for things such as lunch money and field trips. She contacted the company and they informed her that refunds are not given under any circumstances — not even in the event of death.
“There was no ‘sorry for your loss’ or any offer to check with a manager to make an exception,” she explains.
Batterbee contacted her son’s school and they immediately offered to help, but to this day she still hasn’t received any money back.
“The medical world isn’t set up to support a family after the loss of a child,” Batterbee points out. “I emailed Reece’s doctors that he had passed, and we received a couple of responses back with the typical ‘sorry for your loss’ but that’s it.”
Now, all she receives is bills.
“I do wish that the medical system had a support system set up after the loss of a child,” she notes, “but I am guessing that those types of services aren’t profitable.”
Sadly, it isn’t uncommon for __parents of deceased children to be further traumatized while dealing with the “logistics” of death. Take the recent case of a mother who was humiliated when she attempted to return baby items purchased for her stillborn baby at Babies ‘R Us, or the Seattle parents who were forced to pay a “death tax” after the death of their baby.
While government agencies, hospitals, and other businesses must collect their money to run properly, it’s also important for them to instill a sense of humanity when dealing with those left behind. This isn’t something that can be regulated, but surely it should be incorporated into company policy. Is it really that hard to personalize a letter to the parent of a deceased child, offering a brief show of condolences in addition to the necessary sensitive material, or make policy exceptions in the case of death?
Human beings are not just numbers and statistics. While the show of life must go on after a death, we must remember that the price of emotional pain endured by a bereaved parent cannot be measured, and the extra effort it would take to pacify any additional triggers is surely worth it.