By Joanne De Simone
My husband and I sat in the orthopedic surgeon’s office debating my fifteen-year-old son’s need for hip surgery, and foot surgery, plus a procedure to remove unnecessary screws from a previous scoliosis surgery. I could manage all of that, but when the doctor suggested we first have a feeding tube placed, I lost it.
When Benjamin was just eighteen months old, a geneticist told us, “Your son has a fifty percent chance of living to the age of ten.” Benjamin would need a feeding tube in the near future and, in his experience, fifty percent of children with feeding tubes died within a ten year time period. John and I immediately decided we wanted to avoid feeding tubes. Of course we knew feeding tubes alone didn’t cause death, but no rational discussion could excise the geneticist’s correlation.
To his credit, the orthopedic surgeon made a strong case. “A feeding tube will improve everyone’s quality of life. It will be easier for you to regulate calories. Additional weight gain will improve his overall health. Benjamin won’t have to take his twenty-seven daily pills by mouth. It will be easier for others to take care of him in the future.”
Distracted by my tears, John and I struggled to explain our resistance. The surgeon was calm yet clearly frustrated. “Why are parents so conflicted about feeding tubes? Benjamin will be the same child.” His longing for an answer haunts me.
When we first met this surgeon, some thirteen years ago, John and I had liked him right away. He recognized Benjamin’s total well-being—beyond orthopedic issues—and our daily challenges. Today we appreciated his desire to teach us lessons we might not be ready to learn. But that’s not an easy task.
When you have a child with a rare brain malformation, a fragile lifespan, whose development won’t exceed an infant’s, every decision is heavy. John and I try to gauge Benjamin’s vitality. We look into the future, when Benjamin most likely will no longer be with us. Then we ask ourselves, “Are we making the right choices? If he doesn’t wake up tomorrow, will we still be able to sleep at night?”
We have fought Benjamin’s disorder with seizure medications, orthopedic surgeries, physical, occupational, and alternative therapies. We’ve pushed him to live because we love him and we know he loves us. Not one day has been easy. Nature has not been kind to Benjamin, but he’s alive and he’s happy.
I want the surgeon to understand the depth of my emotions. I don’t want Benjamin to need a feeding tube. It’s foreign, unnatural, and that state of being already holds us captive. It will be a visual reminder of his dependence, as if everything else weren’t reminder enough. It will scar his flesh, the belly I kissed when he was a baby and still do. It threatens a familial social bonding activity, and we have so few of those. It will move us even farther away from normal, and a part of us will always feel denied. It will pin him onto predicted medical statistics, and for the past fifteen years we’ve been fighting for Benjamin’s right to a place in this world devoid of numerical markers.
Every invasive procedure scars my soul, threatens my humanity, my place as Benjamin’s mother. Every time a doctor needs to intervene my fears build like a tsunami after an earthquake. In order to give my son up to a doctor, I have to push myself under the wave. I’m always in a state of drowning. Drowning my motherhood.
One of Benjamin’s doctors suggested that parents harbor guilt about feeding tubes because we feel as if we’ve failed to sufficiently nourish our child. It’s a reasonable explanation, but guilt is so much more complicated for parents like me. When Benjamin is suffering, I feel guilty for giving him this life and with every intervention for giving him the means to survive it.
I don’t imagine these realizations are uncommon for parents with children who have severe disabilities. Perhaps the surgeon’s vision of outcome just differs from ours. He believes a feeding tube improves quality of life. But “quality of life” does not have one static definition. Just because something might seem better, doesn’t mean it will make life better. There is nothing that will make our lives better. Perhaps it will be more manageable once we’ve adopted the new norm. But better? No.
Still, hoping to give Benjamin a chance of greater comfort, John and I decided to schedule the feeding tube surgery. We believe it’s the right choice, although I’ll never be happy about it. These are feelings I am well accustomed to.
Benjamin has a team of eight different specialists caring for him. After all these years of sitting in their offices, I like to think I understand the culture in which medical professionals live. I know I have really only strained to see through the peephole. It is the same for doctors. I don’t expect anyone to “get” my truths because mine are a pair of glasses that fit only me. I can give them to this surgeon, but all he’ll get is the reflection of his assumptions, judgments, and perhaps a blurred sense of my reality.
I am haunted by the illusion of the doctor/patient relationship. There is a tenuous line between clinical provider and compassionate caregiver. I’m not sure how far to nudge that distinction. I expect my emotions to influence my choices. That’s my burden. I need doctors to give me concrete facts and their best medical judgment so that I can make rational decisions. I am thankful that Benjamin’s orthopedist strives to understand the family behind the patient, but I don’t want anyone to obstruct his ability to do his job. Not even me.
Joanne De Simone lives in New Jersey with her husband and two sons. She’s a special educator and writer. After Joanne’s “Bury My Son Before I Die” piece was published on Brain Child, she was interviewed on Huffington Post Live. Click here to watch the video.