David G. Thoele
Chicago, Illinois, United States (Spring 2016)
|Martin pictured with his two dads|
The first time I met Martin in my clinic, the 7-year-old seemed friendly, but shy. He was a bit chubby, with dark, short-cropped hair, rounded fingernails, and blue-tinged skin. He was short for his age, with features of Down syndrome, which his mother confirmed. Since half of people with Down syndrome have heart problems, we see many patients with this condition in the pediatric cardiology clinic.
Martin’s curious, crescent-shaped eyes seemed to be sizing me up. He stared at me while I talked with his mother in the sterile exam room. An attractive, thin woman with slightly graying hair, she wore a simple, slightly old-fashioned flower dress. Mrs. Martinez seemed formal and composed, sophisticated in a simple way, with firm guidance for her son. She was also one of the gentlest people I’ve ever met.
She told me the story of her son.
At four years of age, Martin’s skin started to turn blue. He was referred to a pediatric cardiologist, and an echocardiogram showed the large hole in Martin’s heart. His parents were told that unfortunately, nothing could be done to help this condition. His mother had come to my clinic to see if I could help.
The bright fluorescent lights, great for clinical observation, didn’t exactly create a warm ambience. But that didn’t seem to bother Martin. When I reached around to place my stethoscope on his back, I felt his little hands reaching around my own back in a tight bear hug.
“Martin, don’t bother the doctor!” Martin’s mother spoke English clearly and fluently, with a slight accent.
“It’s ok, Mrs. Martinez, I don’t mind,” I said.
I tried to keep my professional, formal demeanor, but I found myself unable to suppress a smile after I experienced that hug.
I reviewed his records and repeated an echo, confirming what the Mexican cardiologist had said. Martin had a large hole in his heart, called a ventricular septal defect, or VSD. If the VSD had been diagnosed earlier, in the first year of life, it could have been surgically corrected. But now it was too late for a surgical cure. Martin’s blue skin indicated low oxygen levels, and he had Eisenmenger complex, meaning his condition was inoperable.
“The doctors told us there was nothing they could do. What do you think, Dr. Thoele? Is that true?”
I thought for a few minutes while I looked through his records. I chose my words carefully. The Martinez family had come a long way just to see me.
“Actually, I disagree with whoever told you there is nothing to do for your son.”
Mrs. Martinez’s eyes lit up, her face breaking into a giant smile.
“You mean you can do an operation, fix the heart?”
“We can’t do an operation, but there’s a lot we can do, and I promise to do everything I can to take excellent care of Martin.”
Mrs. Martinez hugged her son. “Marty, you’re going to be okay. The doctor says there’s a lot he can do!” She looked greatly relieved. I hoped my actions could match my words.
For patients like Martin, good medical care makes a huge difference. Simple measures, like drinking enough water and treating infections, can improve life significantly, and add years to a patient’s life.
Beyond medical care, some other things can improve the quantity and quality of life that help all medical conditions. Love has a powerful healing effect on people, coming from parents, from children, even from doctors. From now on, Martin and I were members of the same team. And it wasn’t always clear who was leading whom.
I said goodbye to Martin and his mother. The rest of the clinic sped by quickly.
At first, my relationship with Martin was not that unusual. Martin and his mother told me how things were going. How far he could walk, how tired he felt, and if things seemed to be getting better or worse. Martin didn’t say much during our visits, but his personality said a lot. He had a bashful, sweet smile, and I began to notice he had a bit of a stutter. “What’s your favorite TV show?” “B-b-b-barney!” “Why do you like Barney?” “He’s a d-d-dinosaur!”
I was polite but tried not to get too attached, since I knew there was a good chance Martin’s medical condition would deteriorate in the future. I had seen children with Eisenmenger die, but that was during my training, when someone else was the “attending of record.”
Now my name was listed as attending physician, and I accepted the role with mixed feelings. I think that’s why many doctors working with very sick patients can seem so cold and detached. I’m not proud of it, but that’s what I was doing: Trying to protect myself from hurt, loss, sadness and shame from losing a patient.
Martin, on the other hand, had a different view of our relationship. Each visit, he would stare at me with his intense brown eyes. Sooner or later, when I was near him, he stealthily wrapped his arms around me in an intense hug, a replay of our first encounter. “Martin has been looking forward to seeing you all week!” his mother said.
I checked with Martin, “Have you really been looking forward to coming here?” He grinned bashfully, looked down, and rapidly nodded his head. “Yes,” he admitted. He was so sweet, I began to sense that the boy with a hole in his heart was breaking down some of the barriers I held in my own heart.
How could I resist falling in love with this charming boy? All day long I was called upon to be a “grown-up.” I had to be a scientist/robot: wise, serious, and detached from my emotions. All of the doctors around me, all of the doctors who taught me, everyone in the medical world acted serious, serious, serious. It seemed like everyone wanted me to act that way, too. My patients expected this, the nurses expected this, the other doctors expected this, and I expected this. Martin forced me to escape from all this seriousness. He didn’t care what we were “supposed” to do; he did what he needed to do, even if his mother kept reminding him, “Don’t bother the doctor!”
One day, after one of his “stealth hugs,” my logical doctor brain left me completely as I half blurted out, “Martin, you are kind of like the son I never had.” Martin’s face beamed, as he focused his entire life force energy in my direction. He looked directly into my eyes. We stared at one another for a few moments. He had a look of total contentment, trust and acceptance, like someone had finally said what he had felt all along. I suspect my face might have had a similar look.
That day, the relationship between Martin and me moved to a new level. I was putty in his hands. It felt like I had crossed some boundary, it felt like love, but it also felt like I’d broken some doctor-patient rule, and I wasn’t quite sure if I might regret it later. Part of me didn’t care. I was sick of being formal and official and responsible all the time.
Martin taught me something I could never learn from a textbook or professor. Martin taught me to connect. Literally connect: when he hugged me, we were physically connected. But we were emotionally connected in a way I hadn’t understood before. His hugs were like an instant tutorial in feelings, in love, in compassion. I discovered I could learn important, sometimes surprising lessons from my patients. And Martin was my first teacher, my first doctor.
As a pediatric cardiologist, I often love and care for my patients deeply, and sometimes I feel like I have many more children than my one biological daughter. Yet, of the thousands of children I’ve cared for over the past 25 years, only Martin actually started to call me Dad after I told him he was like a son to me.
Eventually, Martin’s health deteriorated. On December 2nd, Martin’s 19th birthday, Martin and his family arrived at my house for a special birthday dinner. I baked pizza and a cake for Martin. When the car drove up, I offered to help my “son” into our home. I put my arm around his shoulder, while my other hand rolled his oxygen tank along. Martin was so out of breath, it took a full twenty minutes to walk slowly from the car, up the steps to the front door of my house. It was clear Martin was nearing the end.
The last time I saw Martin, so weak he could barely breathe, he somehow found the strength to give me several of those special, intense hugs.
A few days later, I received a phone call.
“He’s dead! My son is dead, doctor!” I immediately recognized the desperate, slightly accented voice on the phone. Mrs. Martinez. Loud screams alternated with deep, anguished sobs.
Now “the boy with two dads” was gone, along with his hugs.
A few years later, on Martin’s birthday, I had breakfast with Martin’s parents, and we visited Martin’s grave. We cried together. We hugged one another. We told stories of Martin.
It’s been over ten years since Martin passed away. Every year, on December 2, I call his parents and we talk about our special boy and what he meant for us. How he changed us. And how we will never, ever forget him. Or his hugs.
DAVID G. THOELE, MD, is a pediatric cardiologist and is the Director of Narrative Medicine at Advocate Children’s Hospital in Chicago. His creative essays are featured in Pulse, Hektoen International, Ars Medica, and Physicians Practice. He has led and participated in workshops at The Examined Life Conference. He learned a new perspective when his daughter got sick and he experienced the medical system from a parent’s point of view. He started the Narrative Medicine group at his hospital, working collaboratively with pediatric residents, Child Life, Pastoral Care, Psychology, music therapy and palliative care. The group meets monthly, using writing, music, meditation and relaxation exercises to promote healing.