by Robert Hoge
They turned away without saying anything.
It might have taken her a week to come and see me for the first time and another month before she decided to bring me home, but when she did, Mom’s love for me grew fast and fierce.
A few months later, Mom decided she was ready to take me into the big wide world. Like countless other moms and their kids had done before, we went for a trip to the local shops. Expecting the worst, she held her head high to avoid meeting the gaze of other shoppers, but no one commented, and if anyone stared at me, she didn’t notice. In the future, whenever she did find people staring at her and her ugly little boy, Mom settled for staring back.
Dad approached things differently. He was tall, with broad shoulders, and hair cropped so close to his head it made his giant ears stick out even more. He was pretty rough-and-ready himself and had no problems taking me out in public. He mostly ignored adults when they stared, or told them, “Pull your head in.” With kids, he took a less direct approach.
Sometimes, when I was old enough, we’d swim at the Wynnum Wading Pool—a massive ocean pool on the coast fed by the water coming in at high tide. Local legend had it you couldn’t take three paces without stepping on broken glass, dog poo, or a rusty piece of the pool’s slippery metal slide that had flaked away.
“You shouldn’t go swimming in it,” a kid told me once.
“Why not?” I asked.
“A baby shark swam through the grates and has grown and grown and is now big enough to eat you,” the boy said, and he made a chomping motion with his arms.
I wasn’t sure at first, but decided to take my chances.
I couldn’t hide my face when I was swimming, or the fact I didn’t have normal legs, so once in a while I’d hear comments or get questions.
“Look at his legs!” “Why do you have a squashed nose?” “What’s wrong with your face?” I’d either try to ignore them or reply, “Nothing.” Not Dad, though. If he was in hearing distance when a child came to stare and ask a pointed question, he’d yell, “Oi, you! Go tell your mother she wants you.”
One time when Dad yelled that at a boy who’d asked me if I could smell through my nose, the boy replied, “But I don’t have a mother.”
“Must have been your father, then,” Dad said.
• • •
While my parents started to figure out how I might fit into the world as I was, doctors at the Mater Children’s Hospital were thinking about how they could help me fit in better.
This meant tests and appointments with every kind of medical professional possible: face doctors, brain doctors, speech therapists, eye doctors, dentists, leg doctors, doctors who helped people move around better, and doctors whose job it was to keep you mentally fit and happy.
So. Many. Doctors.
The first thing they decided to do was to chop off part of one of my legs. The doctors told my parents I’d never walk on my squished left leg normally. It was just too short. That meant amputating the foot and the bottom of the leg, and fitting me with a prosthesis—an artificial leg.
The leg had a leather socket that covered my stump. It was attached like a shoe—there was a split down the middle with a long lace pulled tight through holes on either side. To wear it, I’d pull a thick woolen sock over my real leg, slip the fake one over it and tighten the lace so it didn’t fall off. Two metal strips ran from the bottom of the socket all the way down to a circular lump of metal about an inch and a half thick that rested on the ground. My new foot.
What to do about my right leg was more complicated. The foot on it was angled forward like a ballerina’s pointed toes. I could put the front of my foot on the ground when I stood up but not the heel. An operation to fix it failed.
Mom and Dad tried to get a special boot made that would fit my foot—a high heel for a two-year-old boy—but that didn’t work either. By the time I turned two years old, I still couldn’t walk.
My parents kept trying, though. After another year of slow and patient practice, one day my mom took me by the arms and helped me up our front stairs. On the landing she stood me up and got me to hold on to the railing. She took a few steps backward and held out her hands.
“Walk to me, Robert,” she said.
I was nervous and stayed holding on to the railing.
“You can do it,” she said.
Slowly I took a step toward her, then another. And then I fell over.
“Well done, Robert,” Mom said.
Then she got me to do it again. I did. When my brothers and sisters came home from school I did it for them too. Finally, Dad returned home from work. He came and sat in the lounge room and Mom held me up between her outstretched hands.
“Walk to Daddy,” she whispered in my ear.
I took a tentative step after she let go of my hands and didn’t fall over. Then I took another step and another, before making it all the way over to my father.
I was three years old and had just taken my first steps.
• • •
It’s probably no surprise that my earliest memory is about being in the hospital. After the surgery on my right ankle, I had a plaster cast covering my leg. One of the nurses put me on the floor to play and I apparently sat for a little while, then took off.
I remember crawling up a set of stairs bathed in sunlight. They looked like giant chocolate bars stacked on top of each other. I found my way into a strange room that had a long center aisle with a shiny floor and long, flat seats on either side. There were colorful windows and unusual paintings on the wall. Someone was sitting, alone and quiet, down in the front of the room.
I had found my way into the hospital’s chapel, one floor up from my hospital ward.
I clomped toward the front of the room, the plaster cast on my leg banging on the wooden floor as I crawled. The nun remained still for a moment, then turned with a kind of dread in her eyes. I think she prayed a little bit harder hearing me coming up behind her.
By the time I turned three, my doctors recommended that I undergo a major operation to fix my face. My facial deformities didn’t present an ongoing danger to my physical health, but the doctors were concerned that they might make it hard for me to make friends.
Despite the love of a mother and a father for their son, despite my general health and well-being, I was still ugly. Not just plain ugly either. Mine wasn’t any sort of cheap, home-brand ugly—it was an A-grade, top-of-the-range ugly.
The doctors wanted to make me a friend-friendly face.
Before they went too far with their planning, however, Dr. Atkinson asked that I have a more intense mental evaluation. Were I intellectually disabled too, they probably wouldn’t have gone ahead. Fortunately, I met all of my mental-development milestones, and a test showed I was smart enough to make all the effort worthwhile.
The operation they proposed was a major one. It would make medical history, they said. It would change my life forever, they said.
Or end it.
4
Hide-and-Seek
Pick up two dice.
Now roll them.
If the number rolled adds up to ten, eleven, or twelve, I die on the operating table.
That’s essentially what the doctors at the Mater hospital told my parents when they discussed the operation they were planning.
“The operation is crucial,” one doctor said.
“It’s vital in ways that go beyond your son’s physical health,” another said. “Please understand, though, there’s a significant chance Robert could die while we’re operating.”
• • •
Humans are like social Legos. We connect together with families. We build lives with friends. On our own, we’re just one piece. When we come together in groups, we make amazing things. Our admission ticket into these groups is not our thoughts or our feelings. Our faces are our tickets. Our faces let u
s look out and know others and let them know us.
Doctors had done a small operation just after I was born to remove the tumor that split the middle of my face and caused my facial deformities. It meant I was left with no nose at all—and with nostrils drilled into the flat center of my face. Plus, my eyes still sat more than twice as far apart as they should have been.
They were so far apart I couldn’t use both of them to focus on any one thing at the same time. If I wanted to look closely at something like a toy or a book, I either had to pick it up and move it around to the side of my head or turn my head to bring one eye in line with it. It also meant I couldn’t judge distances properly. Without this depth perception I wouldn’t be able to catch a ball and I would forever be walking into walls.
The doctors were worried my face would prove a huge problem when I ventured beyond the safe walls of Fortress Hoge and into the big, wide world. They were concerned that my stand-out-in-a-crowd face might make me afraid to go out in public, let alone do things like talk to people. Without some facial surgery, I might play the perfect game of hide-and-seek—never emerging to make friends.
Any surgery would need to be done well before I started school, to give me time to recover. But the bone structure in a baby’s head is as chaotic as a busy road during peak hour. Bone plates move and grow over time, with the skull eventually forming a thick, solid layer of protection around the brain. Any operations done on my bones might stop them growing properly and mean the whole thing would fail.
The doctors decided the best time to operate would be when I was about four and a half years old. By then the underlying structure of my face would be set and I’d have plenty of time to recover before school.
Slowly and surely the doctors drew their plans to carve up my cranium, move some pieces around, toss away the chunks they didn’t need, and put some new stuff in for good measure. They’d move my eyes closer together, reposition my nostrils and build me a new nose from the ground up. All that medical magic would give me a new face that was more acceptable to society.
But the magic trick came with a catch.
It was major surgery: a type of operation hardly ever performed anywhere in the world, let alone a nation as small as Australia. The doctors could not be sure how long the intricate surgery would take, but they were expecting it would be up to six hours. That meant lots of risks.
Being put under general anesthetic for so long presents a risk of brain damage. Next up was the chance of infection, which is especially high when bone is being cut and moved around. Any operation on the face also means lots of bleeding. Combined, the risks meant the operation could kill me.
“The chance of Robert dying while we operate is as high as one in four,” the doctors said.
I’d had six operations since I was born, but none was anywhere near as risky as this one.
To complicate things even more, my doctors told Mom and Dad they wanted to amputate my right foot at the same time. It was a sad blow. An operation on my right ankle hadn’t worked. The doctors said I’d be better off with two artificial legs rather than having just one and a deformed foot that didn’t reach the ground properly. Instead of just disposing of the foot, though, the doctors wanted to use cartilage from the toes to build me a new nose.
The doctors put the question to my parents. Given all the benefits, and all the risks, would they give the go-ahead for the surgery?
Dad was a gambler and understood the odds the doctors gave him. He didn’t want to roll those dice.
“No,” he said. “No operation to make Robert look better is worth a one-in-four chance of him dying.”
“Why not?” Mom asked.
Dad told her he was never one to be concerned about “pride of appearance,” as he called it. What use was there in being slightly less ugly and dead?
Mom wanted to go ahead despite the risks. She thought it needed to be done to give me a fair chance at a normal social life. My parents argued back and forth. For months the question remained unresolved. With the help of the doctors, Mom mounted a strong case and moved Dad from a definite “no” to a “probably not.”
But he’d go no further. Eventually the issue came to a head. The hospital only needed the signature of one parent to do the surgery. Mom told Dad that if he said no, she would consider leaving him and taking me with her so the decision would be all hers.
She had gone from being a new mother who did not want to see her baby, let alone bring him home, to someone who would put everything on the line for his future. Mom wasn’t trying to blackmail Dad. She was just showing him how strongly she believed that the operation was worth the risk. Blackmail wouldn’t have worked on Dad anyway.
A few days later Dad finally said yes. Even though he couldn’t understand why people would judge others at face value, he knew it was a fact of life. To be fair to me, he said, to save me from being rejected by society, the operation should go ahead. Both Mom and Dad signed the consent form.
Those dice were about to be rolled.
5
The Big Fix
Remember the baby’s head sculpture you did in our imaginary art class? Dig it out. Not the nice, A+ one you started with, mind you. No, we need the ugly, bumpy one with the squished nose you had at the end of it all.
“Make it normal,” your teacher says.
This time you don’t waste a moment waiting for more instructions.
Looking at it, you see right away that the biggest problem is the massive chunk of clay in the middle of the face that’s not supposed to be there. You start trying to reshape the nose and smooth over some of the bumps, but the clay has started to harden and it’s a lot more difficult to work with. It doesn’t move so easily beneath your hands now. Pretty quickly you figure out that working only on the outside isn’t going to be enough. You might be able to smooth the skin a bit, but there’s still a big mess in the middle of the face, and the eyes are nowhere near where they should be.
If just working on the outside won’t fix it, you think, maybe you can work from the inside out instead.
You gouge away the big chunk that’s not supposed to be there and then dig some clay out of the very middle of the face. As you push the sides back together, the eyes move closer to where they should be. After that you can smooth out a few bumps. But your sculpture still needs a nose, so you grab some of the clay you set aside before and make a new one. Carefully you place it on the front of the face where the nose should be. Done.
That’s what my doctors had to do to my face.
The operation took more than a year to plan. Heading the team were the doctor who had spent the most time talking to my parents after I was born, Dr. Atkinson, and plastic surgeon Dr. Tony Emmett. They had years and years of experience between them, but they still had a lot to learn before they would be ready. The type of operation they were planning was only just starting to prove successful overseas, in Mexico and in France.
The doctors took trips to France, the United States, Scotland, and Mexico to study new techniques that were being developed—especially those of French surgeon Paul Tessier, whose pioneering work was fundamental. Dr. Tessier’s approach was a bold one. Before then, patients with complex facial problems like mine had different parts of their faces treated separately. Doctors would fix one part of the jigsaw, then the next and the next and the next.
Dr. Tessier’s suggestion was that you get all the experts together to try to fix as many of the problems as they could all at once. Fewer operations meant better results and reduced the likelihood of complications. The technique was called craniofacial surgery. Improvements in anesthetics, and new drills and bone saws that allowed for precision cutting of the skull, made it possible.
The surgical team took life-size pictures of my face and X-rays of my skull so they could match the two together and see where bone and skin would have to be cut and moved. To rehearse and refine the procedur
e, Dr. Atkinson and Dr. Emmett took human skulls home at night and practiced cutting them up.
When everything was ready, the plan included forty different surgical procedures. They just needed a team to do it. Then, like superhero Avengers, the team assembled at Mater: five surgeons who’d work on different parts of my body, two assistants to help them, three anesthetists to make sure I stayed unconscious during the operation, plus nine different nurses. And me, the Hulk.
Teams started work at both ends of my body at the same time. One surgeon amputated my right foot and the bottom of my leg, while at the other end the doctors started remaking my face. They cut through the top of my skull so they would have easier access to my eye sockets and could move skin and bone around more accurately.
The surgeons carefully cut around the bones of my eye sockets and moved each eye a little more than half an inch—from the side of my head to the front, and down slightly. They had to leave room to build my nose, but the eye surgeon made sure the sockets were as close to where they should be as possible.
The whole time, doctors had to pump blood into me to replace what I was losing.
The surgeons who had amputated my leg were now working on the skin, bone, and cartilage they had removed. They used a long part of the bone from my amputated big toe to make a bridge for my new nose. Then they took cartilage from the amputated foot and sculpted it around the bone to make me a nose. Leftover bone was used to fill the large gaps where my eye sockets had originally been.
It sounds simple, but the whole procedure took double the time expected, clocking in at more than twelve hours.
I started the day as a boy with a right leg and deformed foot, no nose, and eyes at the sides of my head. I finished it with eyes at the front of my head, no right leg, no foot, and a new nose. I’d had my leg cut off and my head cut open and put back together again. I’d been under anesthetic for a dangerously long time. My blood had been replaced three times over. Despite all this, I survived.