What I Wish You Knew

When my daughter was a month old, we took her to an emergency room in Texas. Her adoption had occurred in another state, and we used the out of town opportunity to visit family. Before leaving her home state, we expressed concerns regarding her head growth and demeanor to doctors, but they told us to keep an eye on it and sent us on our way. A week later, we felt our daughter’s extreme discomfort and increasing head circumference warranted an ER visit. That night our daughter was transferred from the military hospital to the local children’s hospital. She experienced her first ambulance ride, as did I, and we found ourselves admitted to the PICU as doctors assessed what was going on with our little girl. It was the first time we experienced what it means to be the parent of a medically complex child, and we fought exhaustion, fear, and tough decisions in hours that both dragged on and sped by in a blur. Tucked inside those white walls, we were offered a DNR– presented as mercy– to sign for our daughter. It was this stay that we met the neurosurgeon who acknowledged our daughter’s rapidly growing head but refused to place a shunt, asking us, “Why did you adopt her? You know she’s going to die.” On the day of discharge, we left with no treatment and with our daughter on hospice.

Here we are, more than three years later. Our daughter’s condition is still considered “incompatible with life” even though she lives, as do hundreds of other children and young adults with hydranencephaly. In fact, a man with hydranencephaly celebrated his 30th birthday this week. But on paper, to the medical community at large, my daughter is terminal and living on borrowed time.

Over the years, we have had a few experiences with less than helpful doctors, but for the most part, we have worked with amazing ones. We have had many doctors get to know our daughter and solve the puzzle of her complex medical needs as each one has arisen. These doctors and nurses have helped us give our daughter a beautiful quality of life. We are a team, and I am thankful for all of the members.

But what happens when the doctors can’t be on our team? What happens when they are overworked and undersupplied and forced to make decisions on who to help? Logic and new guidelines dictate to save the most lives and the most liveable years as possible. If she has to compete for resources, my “terminal” daughter will be sent home on hospice, like she was the day we left that Texas hospital. But this time, we won’t be able to drive home and find a surgeon who will treat her. Denial of care now will almost certainly mean her death.

That’s our reality in this world. My biggest fear is not that my daughter would get sick, it’s that she would get sick or have a shunt failure when resources are low. My abject terror is being denied care. The impact of that decision would be like pulling the pin and dropping a grenade, shrapnel radiating out to cause agonizing pain and lasting wounds to my family and all doctors, nurses, and staff involved. It’s their nightmare as much as it is mine.

So when I hear people suggesting protecting those at-risk while opening the economy, I want them to know what that means. It’s easy to understand the needs of the economy, but protecting us takes more work, we are, after all, complex. It means systems that allow us to get medicine without leaving our homes and food without being relegated to what’s left on picked-over shelves. It means family members and caregivers allowed to telework or stay home without losing their jobs. It means providing financial help without criticism or stigma so they can protect their family and not suffer alone while the rest of the economy recovers. It looks like people washing their hands, isolating when sick, and doing all they can to make communal spaces clean for when we need to go out. It means understanding what is being asked of us– to self-quarantine longer than the rest of the world, which will be even more isolating as regular life resumes and we remain on the outside. Most importantly, it means hospitals adequately staffed and supplied so that they don’t have to make decisions on who to treat and who to deny. Because at-risk people deserve all resources available, a team in their corner, and the chance to fight.

When we left that hospital in December of 2016, we were grieving and scared. Three years have shown us our daughter’s immense strength and challenged us to match her fight. And while this virus has dramatically changed the world around us, it hasn’t changed who my daughter is. All she has ever needed is a fighting chance, that’s all we want, and I remain hopeful that that’s what we’ll continue to have.