The Unexpected Wonders of My Son’s Short Life | James G. Robinson | TED

Hi, my name is James. I live in Brooklyn, New York, with my wife Tali, and I'm a dad. And when people hear that, they always ask me the same question. How many kids do you have? Well, the answer is three. Three amazing boys. And then they say, "How old are they?" And that's where things get a little complicated because one of them, Nadav, was born with a heart defect and died nine years ago, at the age of five. When I tell people this, they always have the same reaction. "That's the worst thing I could ever imagine." In fact, some of you are probably feeling that right now. But they don’t realize what a privilege it was to be his father and how grateful I am for having had that experience. And today I'm going to explain why. Nadav was born with a single ventricle, the result of a condition called heterotaxy. It required three surgeries before the age of four. The first one at only five days old. But there was no fixing his heart.

These operations were merely palliative -- a series of sophisticated hacks designed to stabilize his circulation. The hope was to get him to teenage years where he might be eligible for a heart transplant. Let me tell you what it's like to get that news. It is absolutely terrifying because it makes you realize how little you know. I didn't know whether these operations would be a success. I didn't know whether Nadav would live or die. And worst of all, if he did die, I didn't know how I would tell his brothers. Parenting is all about making choices. We wrestle with the unknown as best we can, hoping that things will work out for the best. We hope that the decisions we make are the right ones. And when things go wrong, we worry that there are no right decisions at all. We simply do not know. But there is also wonder to be found in the unknown. When our first son was born, I left the hospital giddy with awe that we had somehow conjured a new life into the world.

And when his brother was born with a heart defect four years later, it made me realize how truly remarkable this actually is. When we are first conceived, just a bundle of cells, perfectly symmetrical. On the outside of the embryo are tiny hairs called cilia. Their job is to beat the amniotic fluid around the embryo. This lays out the proteins that tell our organs how to form. If the cilia are not working quite right, and this is what happened with Nadav, the flow is erratic, the proteins are in the wrong position and our organs are malformed. This happens in the span of three hours. In time for dinner and a movie, your fate is sealed. It absolutely blew my mind to learn this. And had he not been born with a heart defect, I never would have appreciated it. Forget that anything ever goes wrong. How incredible is it that anything ever goes right? (Applause) Of course, as the parent of a medically complicated child, you don't have a lot of time for philosophy.

It was hard enough parenting a healthy kid -- suddenly we had to start thinking like doctors. I realized how ambiguous the practice of medicine is. Everything is open to interpretation. We learned that doctors are not magicians or gods. They have a certain level of expertise, but they, too, wrestle with the unknown. The best doctors were the ones who were honest and humble about what they didn't know. And one thing doctors knew nothing about was how to parent our children. As one doctor said to us, "Never forget that he is our patient, but he is your son." It was our responsibility to show them the world, and for us that meant traveling. We pushed strollers all around New York. We drove to a favorite beach in North Carolina. We even got on a plane and flew to the West Coast where we visited LEGOLAND and the San Diego Zoo. In every place we tried to show them something new. And then we had an opportunity to go even further, to Australia, a country we loved, right after Nadav's fourth birthday.

This was a place that was very special to us. My mother is from there. Tali lived there for four years. But it wasn't an easy decision. Nadav had just had his third surgery and it was a very long way away. But after long conversations with his doctors, we decided to go. And it was fantastic -- for two weeks. And then, two days before we were due to return home, we noticed that Nadav was not looking well. We took him to the hospital where he was diagnosed with a clot in his circulation that required emergency surgery. The operation lasted ten hours, seven and a half on bypass. He emerged alive, just barely. And we found ourselves stranded on the other side of the world, stuck in an unfamiliar hospital with our son being cared for by people we didn't know. I didn't think things could get any worse. And then they did, because we were called in for a "family meeting." And family meetings are never good news.

This is the family room at the Children's Hospital in Westmead. It's a terrible photo, but honestly, it is a terrible room. Tali and I sat on the left, bracing ourselves for the worst conversation of our lives. On the other side were a bunch of strangers looking grim. All we had was a box of tissues. The doctor in charge cut to the chase. "Nadav is not doing well," he said, "and there are three things that could happen tonight. First, he could improve. And I'm telling you now, that's not going to happen. Second, he could hold steady and that's what we're hoping for. Third, he could deteriorate. And in that case, there's nothing more we can do." I had done a pretty good job to that point of holding things together, but in that moment, I shattered into a million pieces. But Tali remained calm. She looked the doctor right in the eye and said, "So what you're saying is that it's up to him?" "Yes," he said. "I suppose that's right."

"Well, I can live with that," she said. "I trust him." What Tali trusted was something inside of Nadav himself. She put her faith in the mystery of how we grow and heal. The energy that causes the cilia to beat, the map that tells our organs how to form. She trusted the resilience of life. That somehow Nadav’s body would find a way to heal. He made it through that night and many more. But he remained the sickest kid in the ward. More than once, we were told that he was going to die. Every few days in the intensive care unit, a new doctor would come on call, and we would bombard them with questions, hungry for information, and they would say, “Please be patient. We have to get to know him." And I realized they were saying something subtle and profound. They were saying that they did not have the power to heal our son. That only he could heal himself. That their job was to give him the best opportunity to heal. And to do that, they had to get to know him.

One day, the doctor in charge of the unit announced that he was going to take Nadav outside. This sounded absolutely ridiculous. He was intubated, he was in critical condition. It took 45 minutes to get him from his room to the elevator down the hall. But it was such a precious gift. Not out of pity or palliative care, but because he recognized that to heal is human. To feel the wind in your hair, touch leaves, smell flowers, to watch your brothers play, to be together as a family. It was an amazingly human thing to do. We were stuck in Australia for three months until we found a procedure that could help him. The problem was, was that it was being developed at the Children's Hospital of Philadelphia on the other side of the world, which is why an incredible medical team boarded a specially-equipped Gulfstream III in Philadelphia and flew from Philadelphia to Oakland, Oakland to Hawaii, Hawaii to Fiji, Fiji to Sydney.

They landed like astronauts, wearing blue jumpsuits with the American flag on their shoulders and chopped transport on the back. They'd never transported anybody this sick this far. They told us that if he died, they would land at the nearest airport. But thanks in part to his resilience, they somehow made it back. The procedure in Philadelphia was successful. Nadav was no longer in critical condition, but his underlying issues persisted. The biggest problem was that there was still some fluid in his lungs, and we couldn't leave until it cleared. We spent six months in Philadelphia waiting for that lung to clear. In that time, Nadav learned to walk again, to talk again, to eat again, to smile again. We took him outside as much as possible, inspired by our time in Australia. Every morning we would walk to a herb garden in a distant ward, where we would pick fresh oregano for Nadav to eat for lunch, his favorite. We wanted him to feel like a kid again, because we knew how important it was to help him heal. That lung did not clear, no matter what the doctors tried.

They were completely baffled. Eventually, in August, they decided to try a last-ditch procedure to address his lymphatic system, something that nobody quite understood. And thankfully it worked. His lungs cleared. We were under no illusions about his condition. He still had a single ventricle. His body had actually grown all sorts of new connections, hoping to rebalance his circulation. And while I was amazed that his body was finding ways to heal itself, we knew it was unsustainable. Still, we were finally going home. Before we left, though, there was one last moment of wonder. We were asked to participate in a research study examining the genetic causes of Nadav's condition. And what we found was amazing. Nadav had a malformation in his H5 gene that had never been reported before. It was completely unique. Finally, we had scientific proof that our son was one of a kind. (Laughter) But here's what's even more astounding.

It turns out that Tali and I both have the exact same mutation on each of our H5 genes. Completely, perfectly identical, never before reported, never before seen. The genetic counselor suspected that we had a common ancestor 400 or 500 years ago. I knew as soon as I met Tali that we were meant to be together. Little did I know that this would reunite a centuries-old mutation that would screw up our beloved son's heart. But I wouldn't change any of it. What choice did I have? Should we not have gotten married? Should we not have had kids? Should we have cherry-picked embryos hoping to find one free of a defect? Well, then we would be missing our son. A son we loved. And that would be the worst thing I could ever imagine. (Applause) I've already told you how this story ends.

Well, here it is. Five months after we returned home, Nadav died. And when I held him in my arms that night, I felt all sorts of emotion, pain, sadness, grief. But the emotion I felt most of all was pride. Parents live for these moments of pride, graduation, getting married, having kids. I realized that many of these things we would not experience with Nadav. But in his five years, together we experienced as many moments of pride as most parents feel in a lifetime. And then it was time to tell his brothers -- the one thing I had always feared. When I think back to that moment, I think back to conversations I would have with my own father when I was young. We would go outside late at night, and we’d look at the stars. He explained to me that we were seeing the stars as they were millions of years ago. That even though they appeared in the sky, some of them may no longer exist. I asked him what was between the stars and he said “nothing.” I refused to accept this.

We argued about it endlessly. I could not imagine such a thing as nothing. My father's own father had died when he was just 16 years old. I grew up afraid of death, terrified of the concept of nothingness. And when it came time to tell Nadav's brothers that he had died, I felt the same sort of dread. As a father, I always felt it was my job to teach my children about the world. But until Nadav was born, I didn't realize how much our children teach us. Our five years together taught me what it means to be human. It revealed unexpected wonders. And it made me realize that there are some things we will never understand. And so when the time came, I told his brothers the truth as best I could. "Your brother has died," I said, confirming, against my will, the empty darkness that surrounds every shining star. Thank you.

(Applause)