It’s hard to say this now, but I had bad thoughts. It crossed my mind that maybe it would be better if the baby died. How could he live like this? Live through this? Could I hold him? Could I love him? How could I take care of him? Why was this happening to me? Why did God punish me?
Most of that first day is a blur. I remember Russel on the chair next to my bed. He is unshaven, dark circles under his eyes, his hair a mess. He shakes his head, crying. I am only half-present, drifting into oblivion only to open my eyes to the same nightmare. When I come to, Russel asks me if I want to go see him.
I say no. I’m not ready. I’m scared.
He’s breathing, Russel tells me. He’s with the preemies, and they gave him a tiny preemie bassinette. He’s so long that his legs are sticking out of it. He’s fighting for every breath.
The TV was on in the recovery room, a strange tether to the outside world, a world that continued forward despite our tortured confusion. As Russel wept, I prayed. This is the worst day of my life. Give me strength. Give me a sign. Give me something to hold on to.
It was February 8, 2004, and the Grammys were on. Christina Aguilera came onscreen. She walked onto an empty, round platform, dressed simply in a dark suit, with bare feet and dark hair. She sang: “We’re beautiful in every single way. Yes, words won’t bring us down . . .”
Russel and I stared at each other in absolute amazement. It was like she was speaking directly to us. Her words didn’t solve any of Nathaniel’s medical issues, but they answered all the questions and fears that were circling in my head. In that moment, I felt something physically change—a weird strength rose in me. It was almost like I felt God’s presence. He had given me a sign. No matter how my child looked, he would be beautiful. I had been chosen to be his mother. I would love him—I already did. I always had.
Right then, as we listened to the song, I promised God that I would do everything I possibly could to treat our child as a beautiful soul, a beautiful spirit, a beautiful human.
Russel was holding my hand. He said, “Magda, this is going to be our beautiful child no matter what happens. He’s going to change the world one day.”
We both cried, though my tears were different now, no longer tears of fear but of possibility. I was going to turn this situation around and create the best possible outcome. Every parent hopes and believes his child will change the world. Russel and I had the same hope, except that before Nathaniel started making the world a better place, we needed him to live.
I got out of the bed, put on a white robe from Victoria’s Secret that Russel had brought me—a robe that had been meant to welcome a healthy infant, a leftover gift from another lifetime. That didn’t matter anymore. I didn’t look back at the plans we’d made in blissful ignorance. We were on a new path. We walked to the nursery where our baby was resting alongside the preemies. I was ready for him.
We named our son Nathaniel. Later, at his bris, when it came time to pick a Hebrew name for him, our rabbi said, “You don’t have to choose another name. ‘Nathaniel’ is already a Hebrew name. It means ‘gift from God.’”
It would be a while before I reached in the pocket of an old coat and found a little notebook that I had once used for addresses, train schedules, recipes, and odd notes. Written in it was a list that Russel and I had come up with several years before, when we first met. Sitting at a cafe in Prague, fantasizing about our future family, we had scribbled down a few baby names, and for a boy, we had written Nathaniel and Jakub (the Polish form of Jacob).
Long before our special boy was born, we had somehow anticipated our gift from God.
Nathaniel: When I was born, I could hardly breathe. My nose didn’t connect to my airway, and because my jaw was so small, my tongue filled my mouth. There were problems with most of my senses. I couldn’t smell because my cheekbones were behind my nose, blocking it. I couldn’t eat because my jaw was small and out of alignment. I could barely hear because I didn’t have ears to capture the sound and deliver it to my brain. I didn’t have bottom eyelids, which meant I couldn’t close my eyes fully, and my vision wasn’t great, although that was just run-of-the-mill bad luck. Bonus! The only good news on my five senses report card was that I could feel—everything about me from the neck down worked just fine. And my brain was perfectly fine too, maybe even a little bit awesome, if I do say so myself, which would help me deal with all the other problems.
I grew up knowing that I had Treacher Collins and that it made me different, but I didn’t feel different. I felt like myself, the only self I’d ever known. Other kids weren’t fed through a tube in their stomach for the first year and a half of their lives. Other kids didn’t wear hearing aids. Other kids didn’t have a hole in their neck to help them breathe. Other kids didn’t grow up having doctors’ appointments instead of soccer practice and surgeries instead of vacations. Other kids didn’t have a nurse with them at school. Other kids could shower, swim, play roughly, go out in the rain.
The way I see it, a certain number of kids are going to be born with issues like mine every year—an estimated 1 in 50,000, if you ask the people who count. That’s not very many, but that’s just the kids with Treacher Collins. Every year, tens of thousands of kids are born with facial differences in North America, and plenty more have other, different problems to deal with. I definitely don’t want to do the math on that, but I know that if you add all those kids together, I’m just one in a huge crowd. If you look at it that way, I’m pretty normal after all.
In February of 2012 the book Wonder by R.J. Palacio was published. Wonder is the story of Auggie Pullman, a boy with a craniofacial condition that is called mandibulofacial dysostosis in the book, another name for Treacher Collins. Our family cannot overstate the effect this book has had on our lives. Nathaniel had just turned eight when it was published, and it immediately transformed the way people saw and approached him in playgrounds, at school, in the world. Auggie won the hearts of readers, and it’s not an exaggeration to say that his story taught a whole generation of children, and many to follow, to accept others who look different and to choose kindness. This was life-changing—Wonder introduced the rest of the world to some of what we had been dealing with throughout Nathaniel’s whole life, and, in doing so, helped readers feel true empathy for real people living with facial differences, or any differences!
R.J. was inspired to write Wonder by her son’s reactions to a little girl in their neighborhood who had Treacher Collins, and the book focuses on the sociopsychological aspects of Auggie’s experiences—the challenges he faces interacting with the people around him. For us, the way people treat Nathaniel, how they see him, and what he looks like do matter—probably to me more than him—but the social component was eclipsed by the physical challenges he faced on a daily basis from the moment he was born. Normal was our goal, but for us “normal” wasn’t about what Nathaniel saw in the mirror or how kids treated him. “Normal” meant seeing, eating, hearing, breathing. Normal was a happy, carefree childhood.
Who is to say what constitutes “normal”? When you call the thing that is most common normal, you are suggesting that there is something abnormal, wrong, or even bad about being different—there is judgment in the word. And in the beginning, when I yearned for normal, part of what I wanted was not just for Nathaniel to have the comfort and opportunities that any other kid would take for granted, but also for him to be freed from that judgment.
My destiny was to raise a child who was born deaf, unable to eat or close his eyes, and barely able to breathe. A child who lived in a world where every sense was a hard-won victory. A world in which only science and love make anything possible.
2. Congratulations
Even the nurses were scared when I first walked into the NICU (neonatal intensive care unit) nursery. I felt like I was about to deliver a speech or have the most important job interview of my life. In a strange way, it was a feeling I recognized from stepping on stage to perform a piano concert back in Poland. I was scared a
nd sweating, but I remembered how to take a deep breath and rise to the challenge.
The first thing I saw were those long legs, poking out over the end of the bassinet. Russel was right—our boy was too long for the preemie bassinet. Then I saw his little face with big, big eyes. He was gasping for air and, although he was almost a day old, he hadn’t had anything to eat yet because he couldn’t suck. But somehow, inconceivably, he seemed to be smiling at me. Picking him up for the first time, I held him in my arms and said, “I love you, I love you,” half to reassure myself that I did love him. Then I looked him in the eyes and saw the tiny human in there wanting to survive, wanting to live. My baby. Gazing at him, I thought, “You’re my soulmate now. I’m going to protect you and make sure you’re okay. I’ll provide anything you need.”
The doctors and nurses who were taking care of Nathaniel were getting nervous about the fact that this baby hadn’t eaten. He couldn’t nurse or take a bottle. He choked on formula when they tried giving it to him from a syringe. He had the instinct to suck—he’d try, making little sucking noises—but physically he just couldn’t do it. His jaw was so tiny that his tongue, which was unaffected by Treacher Collins, was too big for his mouth. He would cough as he tried to breathe and swallow at the same time. Finally they put a feeding catheter down his throat. It wasn’t a long-term solution, but they didn’t seem to know what else to do.
Where should we take the baby to get him help? Who would know what was wrong with him and how to deal with it? Russel is a man of action. That first day he started calling people: every doctor we knew, every person we knew who might know a doctor, every person we knew who might know a person who might know a doctor. In a crisis, Russel’s mind is sharp and efficient, and by that night he announced, “NYU has a bed for our son. There’s a team of doctors there specializing in Treacher Collins.”
Though I had never heard of, much less worried about, this syndrome, it turned out it wasn’t as rare as I had assumed—one in 50,000 babies is born with it, to varying degrees. Nathaniel was severely affected—there was no prognosis for his immediate survival, much less his quality of life going forward, but knowing that there was a group of doctors who were devoted to helping babies like him was immensely reassuring. Help existed.
The next morning the nurses wrapped Nathaniel up like a burrito and we headed across town in an ambulance to NYU Medical Center. On the ride there, I watched every breath he took.
When we arrived at the craniofacial ward at NYU, we were greeted at the door by a woman who introduced herself as Shelley Cohen. She was the speech pathologist who happened to have been on call when Russel phoned the hospital the night before. She’d arranged for the transfer and had been waiting for us to arrive.
Shelley came up to me, smiled into the bundle I was carrying, and said, “Congratulations, you have a beautiful baby boy.”
It was the first time anyone had congratulated me on the birth of my son. In that moment I absorbed how different my experience was from that of most new mothers, but at the same time, Shelley’s kind words gave me hope that they would come true. My baby could stabilize. He would eat, breathe, and smile. And most important, he would live. I finally felt there was a way for us to move closer to “normal,” to climb out of this nightmare and live as parents and child, in a home, not a hospital, eating meals as a family. What had seemed like a given before Nathaniel was born was now, at least, a possibility.
Nathaniel had two surgeries in the next forty-eight hours. Now that he’s had sixty-seven surgeries I can say that kind of casually, but at the time the notion of someone operating on our tiny child was terrifying, even knowing how badly he needed help.
The first thing they did was put in a gastrointestinal tube. This “g-tube” would allow him to be fed directly into his stomach until the doctors found a way for him to use his mouth. They told me he would be much more comfortable without the catheter in his throat, so although it wasn’t a solution, it was an improvement.
The second not-to-be-discussed-over-dinner surgery was to drill a hole in the bone that was blocking his airway. He was only breathing through his tiny mouth, and this would let him use his nose. Or so we hoped. Our naïveté protected us from what was to come.
When the craniofacial team at NYU stabilized Nathaniel—allowing him to take in air and nutrients—it had the side effect of stabilizing me. The fog of fear and confusion lifted and I began to see our situation in more practical terms. Nathaniel would need help with life functions, which would require multiple surgeries and prolonged medical attention. It would require all of our resources: every bit of strength and faith, all of our time and energy, every dime we had. He would struggle physically, but, like almost all people with Treacher Collins, he was unaffected mentally.
This was the first time I stopped to realize that behind his face, which cried out for help and repair, was a curious little mind, ready to greet the world. My child would recognize me and love me! And he would learn about butterflies, get lost in books, and explore the world, even if often from a hospital bed. The good—great—saving grace was that I would be able to bond with him, so I began to focus on that. Besides, now that I had held him, all the maternal hormones had kicked in. We were already connected, and I was determined to make his world warm and safe. Determined . . . but crying. Those maternal hormones had a bonus feature: shock and trauma gave way to the worry of boundless love. This child was everything to me, and I couldn’t stop crying.
Russel comforted me, never questioning my ability to be Nathaniel’s mother. He knew I was exhausted and realized that my simple, hardworking life before had in no way prepared me for this experience. But he always says it was Nathaniel’s spirit that gave me strength. He tells Nathaniel, “The picture I have in my mind is your mother sitting in a rocking chair in the NICU. She is clutching you to her chest. Tubes are springing out of you in every direction, but your mom is humming, caressing you, loving you.”
3. The First Twenty-Eight Days
The NICU became our new home. There were eight cribs, eight preemies, all small, sweet versions of what you expect a baby to look like. Nathaniel looked enormous next to them. His issues were more obvious than theirs, but his prognosis was better. Some of the preemies were at much higher risk, whereas now that he was stable, he would definitely make it out of this hospital. Like us, most of the families there had expected to bring home a healthy child.
Every family with a baby in the NICU, and later the PICU (pediatric intensive care unit), had their own story of fear, anxiety, and heartbreak. For the most part we were all so focused on our own children that we lived our vigils in parallel isolation, but sometimes I had a glimpse into another mother’s world.
There was a room where every new mom would sit to pump breast milk for the babies who couldn’t suck. When we were done, we put it in a special refrigerator where we had shelves labeled with our names. Some of the mothers who couldn’t stay at the hospital pumped at home and brought in milk that the nurses could feed their babies when they weren’t there.
Nathaniel’s milk shelf was labeled “N. Newman.” The shelf above it was labeled “Neuman” and was used by a Hasidic mother, a sweet woman who was always kind to me. She and her husband often prayed, and once she gave me a small bible. She told me that, according to tradition, their baby wouldn’t be named until it came home.
One day there was a commotion outside the NICU and the nurses came in to find me. Apparently they had given baby Neuman a full night’s worth of the breast milk that I had pumped for Nathaniel.
The Hasidic family was distraught. The father asked me a number of questions about my culture and practices. He wanted to know my diet and whether I ate pork.
“I’m from Poland,” I said. “I’m sorry. But my husband is Jewish?”
This didn’t appease them. Russel wasn’t considered Jewish in their culture. The father was so upset he couldn’t look me in the eye.
The nurses apologetically asked if they could take my
blood so they could reassure the family that the baby hadn’t been exposed to anything. I gave them about six vials. Baby Neuman was fine, but I think one of the nurses lost her job that morning.
There was another baby, a dark-haired girl who lay still in her bassinet. She was intubated and gave no signs of life. When the mother, who looked about fifteen years old, visited, she’d put the baby in pretty dresses and play with her like she was a doll. I never saw the father.
When I finally asked the nurses, who had become my friends, about this young mother, they told me, “The baby is brain dead. The dad shook her, and she won’t recover from the brain trauma. If they take her off life support, the baby will die and the father will go to prison. They’re waiting for his trial.”
The doctors were trying to convince them it was time to turn off the machines, but the family refused.
In the hallway outside the NICU they had photos of babies who had spent time in the hospital. A year later I came in for an appointment and went to say hello to the nurses. I noticed that there was a photo of that young mother holding her baby—but the girl was much bigger. She must have been eight months old, and she was still hooked up to the life-support machines. I have no idea how long they kept that baby in that state, but it was heartbreaking. All these parents, sharing the same pain, but trapped in their own tragedies.
There was another family I would meet later, when Nathaniel was in the PICU, which was across the hall from the NICU and would itself become another home away from home. The mother had two boys, who were five and seven. The younger son was very sick. There was something wrong with his heart, and he had been in the hospital for four months. Russel and I would hang out with the seven-year-old, who was very cute and chatty.
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