Where Are The Support Systems for Families Who Have Lost a Child?

“It is time to improve standards of care.”

My daughter, June, died of neuroblastoma when she was eighteen months old. The days thereafter were isolating and lonely. That was nearly three years ago, and to my surprise and not, the lonesome nature of losing a child has remained prevalent in my life.

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I never imagined that when June perished in the face of pediatric cancer, so would the practitioners, such as the nurses and doctors, who had steadfastly stood by our side. It’s not that we no longer wanted them in our lives, nor do I believe, they didn’t want us.

As a mother, deeply in mourning, I didn’t make a choice as to who should stay or go. Many of the days that followed June’s death were a blur. I know matter-of-factly that the sun and moon accompanied me, but I don’t remember them, either. Mostly, I remember the stained blue couch I sat on, eight months pregnant with June’s younger brother, while staring at a television that couldn’t penetrate my brain no matter how many hours I looked at it. The television, a fixed prop on the wall, was there for company. My brain could take nothing in, which matched what I offered to the world.

Often, the television and the dog were my best companions at the lowest low of my life. If you have lost someone, then you know, all you need is a warm body by your side. Not to speak to or to touch. Just one that will sit there and listen if you want to talk or share a fleeting thought, about the one you lost, before it’s gone forever. You need someone to create space for when the pain becomes too great (because it will and it does) and you worry, you too, might die. In dire circumstances, a warm body has the power to reflect that you are(fortunately or not) still alive.

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The last nurse that played a role in our lives, in relation to June, was the one my husband called the morning after she passed away. We had been given instructions to make the phone call when we were ready for someone to dispose of every last remnant of June’s medication from the previous ten months of treatment.

There were orange bottles the nurse pulled from the cabinet and tossed in a bag. The white labels had been worn and were peeling at the edges from being gripped tightly in the middle of the night as I tried to twist off the childproof cap while balancing June, who was nauseous, feverish, and drooping like a wilted flower in my arm.

There were syringes that had the numbers rubbed off of them that the nurse also dropped into the bag. A plastic bag of fruitless endeavors was another indicator June’s life had come to an abrupt end. Something I couldn't grasp as I sat, perched rigidly on the couch, unable to get comfortable in my body, as I watched the nurse carry the bag, one heaping pile of waste, out the front door. The medications had sustained her life, offering daily reprieve from the debilitating symptoms caused by chemotherapy and stem cell transplants.

I watched the nurse take it all away. As she closed the door behind her, I had no idea that would be the last of our ties to the pediatric healthcare world.

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After June died, the doctors and nurses we had leaned on for support and hope, disappeared into death’s abyss as if they, too, walked into the same fog of grief that had been lowered over our life.

The fog, which clouded the sun for years, was filled with dewy crystals of mourning, loss, and pain. It appeared that life had frozen over when our child died. It took months before I noticed the icy crystals and the way in which they were affecting me, keeping me cold and wet, stinging or numbing me in places I’d never felt.

The doctors and nurses had walked through them, also affected, “But how?”I wondered. Did some of the crystals cling to the clothing of the practitioners? Did they wipe them off? Did they melt? Did they leave a stain? Would they forget June? Our family?

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Let me be clear, I do not blame the practitioners. Most every healthcare provider who played a role in June’s life was absolutely wonderful. We were extremely fortunate. The outcome was not their fault. Nor was it ours, her parents, her advocates, and often onlookers in the incomprehensible scene of June’s life.

Instead, I blame the system for not having better protocols. I blame the clear lack of standards of care in place for the families when a child dies. The healthcare community thrives on standards of care, which is the level of care a practitioner should provide a patient and family. Something I am familiar with because I am a nurse.

According to the National Cancer Institute pediatric cancer occurs within the context of a family and differs from adults cancers, which primarily affect one or two other adults in the adult patient’s life. With pediatric cancer, the ripple of the diagnosis is felt among one to two parents, siblings who are often children or adolescents, teachers, friends, aunts and uncles, cousins, and others who may have been in direct care of the child. Parents, not the patient, make the decisions regarding the child’s care and what treatments they will or will not receive. Children, their cancers, treatments, and deaths are embedded in the lives of the people who love them, primarily their families.

How do we implement a level of care for a bereaved family? Which nurses, doctors, or nurse practitioners would take on that role and responsibility?

Many people in healthcare do not know what to do, which was demonstrated to me over and over when some of June’s doctors wrote or called us after she died, and others, who played an intricate role in her life, did not, and never have.

Doctors attempt to keep our kids alive, but the hard truth is that our children also die, and when they do, so do the protocols. It’s time we weave our child’s treatment into their death and create some sort of sustainable, linear, supportive afterlife for families.

Perhaps, those that didn’t reach out, felt they had failed June, although that would be to completely ignore her death. Maybe their shortcomings were due to a simple lack in the standard of care. Either way, both feel wrong.

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The memory of June lives on through the lives of the people who helped us through treatment. Ultimately, they are no longer a part of our lives, and that is okay, however, we must continue the conversation around what a support system looks like for a mother, a parent, or a caregiver after their child dies. It cannot be the sole responsibility of the parent to navigate the child’s death alone.

What is one to do after their child dies and the foundation on which the disease was built upon crumbles?

It’s time to pass the torch to those with a greater knowing of how grief and child loss unfold and how to tend to the aching wounds of parents. To implement experts during a devastating tragedy in aiding our families with a standard of care. Not only for those who have lost children to cancer, but for those who have lost a child, period.

June is a part of me and I cannot pretend she did not exist. Because the healthcare world was not equipped for her to die, it feels synonymous with pretending she never existed. There is no greater subsequent heartbreak for a mother after her child dies than being left alone by the world to grieve. No one casts a net. The only reminder someone still remembers her child and her family is through a Celebration of Life card, painfully addressed to the parents of the deceased child, that comes once a year in the mail.