The Surgeon’s Words Haunt Me

The Surgeon’s Words Haunt Me

By Joanne De Simone

feeding tube

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.

Bury My Son Before I Die

Bury My Son Before I Die

By Joanne De Simone

joannedesimoneIt goes against everything we believe about motherhood, but I’d rather bury my child than leave him behind.

My son Benjamin was born with Lissencephaly, a rare brain malformation. Developmentally he’s like an infant in a fifteen-year-old body. He can’t walk, talk, or use his hands. I bathe, feed, and diaper him every day. In the not so distant past, Benjamin would have been institutionalized. Without an arsenal of seizure medications, he wouldn’t have lived to see his first birthday. By the age of ten, he was taking twenty-six prescribed pills daily.

Many children with Benjamin’s disorder suffer with chronic pneumonia, and unstoppable seizures. Medical advances and invasive interventions, like tracheostomies and feeding tubes, have extended their lives but cannot change reality. These children die, young. I have spent Benjamin’s entire lifetime mourning the deaths of children I’ve met on the Internet.

When I dreamt of parenthood, I expected to raise children who would grow strong and healthy. I dreamt of watching them graduate college and launch exciting careers. I hoped they would fall in love, marry and fill my life with grandchildren. I never thought I’d envision my son’s name on a headstone in a peaceful resting place.

It began when Benjamin was diagnosed at four months old.  My husband and I were forced to redefine parenthood. We couldn’t protect our son from his physical devastation. Our only goal was to give Benjamin the best quality of life. We knew that the definition of “quality” would be hazy, dependent on Benjamin’s needs and our capabilities. We knew we would always be judged.

The miracle in this situation is the existence of Benjamin’s joyful soul. Although he has constant pain ranging from constipation to his slowly dislocating hip, Benjamin has never gone one day without smiling. He loves when I read, sing and dance for him. He likes to stay up late with company, and sit on his Daddy’s lap for hours. He fills our home with his contagious laughter.

I have looked into Benjamin’s eyes more than I’ve ever looked into anyone’s. I’ll never know his thoughts, but our connection is powerful. He possesses an intangible, indefinable beauty. I love my son in a way I will never love anyone else.

I used to worry about Benjamin dying but now fifteen years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do.

A few years ago Benjamin was vomiting for two weeks. The doctors assumed it was a virus, instructed us to wait it out. We watched him grow weak. There was a vacant, lifeless look in his eyes. He was a suffering shadow of himself. I kept pushing the doctors to help him fight to live. I felt selfish. Part of me wanted him to let go and die. That felt selfish too. Because of my persistence, we discovered Benjamin had an atypical presentation of pneumonia. I fear the day my voice is silenced.

If orphaned, Benjamin would need to live in some kind of hospital facility. I’ve seen medical residencies for children like Benjamin. They are sad places. A hospital setting is a business, not a home. I picture Benjamin alone in a bed, hooked up to tubes, nothing more than an insignificant number on a chart. With that in mind, I’d rather see him dead.

I have learned to embrace motherhood with brutal honesty. I don’t actually want to see my son take his last breath. I don’t want to know life without him. For as long as I live, I will do whatever I can to keep Benjamin healthy and give him the best possible quality of life. His happiness is my happiness. He is no less than anyone else, deserves every right and consideration. As Benjamin’s advocate I can guarantee a strong proactive force. When I’m gone, I can do no more.

I will regret some of these thoughts if I do one day find myself standing on Benjamin’s grave, but there will be no peace if he is wheeled across mine.

Joanne De Simone lives in New Jersey with her husband and two sons.  She’s a special educator and writer whose work has appeared in The Huffington Post.

Since this piece was published on Brain Child, Joanne was interviewed on Huffington Post Live. Click here to watch the video.