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The Unexpected Wonders of My Son’s Short Life | James G. Robinson | TED
The Unexpected Wonders of My Son’s Short Life | James G. Robinson | TED
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Subtitles (281)
0:04
Hi, my name is James.
0:06
I live in Brooklyn, New York, with my wife Tali,
0:08
and I'm a dad.
0:10
And when people hear that, they always ask me the same question.
0:13
How many kids do you have?
0:15
Well, the answer is three.
0:17
Three amazing boys.
0:19
And then they say, "How old are they?"
0:22
And that's where things get a little complicated
0:24
because one of them, Nadav,
0:27
was born with a heart defect
0:28
and died nine years ago, at the age of five.
0:32
When I tell people this, they always have the same reaction.
0:35
"That's the worst thing I could ever imagine."
0:39
In fact, some of you are probably feeling that right now.
0:42
But they don’t realize what a privilege it was to be his father
0:46
and how grateful I am for having had that experience.
0:49
And today I'm going to explain why.
0:52
Nadav was born with a single ventricle,
0:55
the result of a condition called heterotaxy.
0:57
It required three surgeries before the age of four.
1:01
The first one at only five days old.
1:04
But there was no fixing his heart.
1:06
These operations were merely palliative --
1:08
a series of sophisticated hacks designed to stabilize his circulation.
1:12
The hope was to get him to teenage years
1:14
where he might be eligible for a heart transplant.
1:17
Let me tell you what it's like to get that news.
1:20
It is absolutely terrifying
1:23
because it makes you realize how little you know.
1:26
I didn't know whether these operations would be a success.
1:29
I didn't know whether Nadav would live or die.
1:32
And worst of all, if he did die,
1:34
I didn't know how I would tell his brothers.
1:38
Parenting is all about making choices.
1:41
We wrestle with the unknown as best we can,
1:44
hoping that things will work out for the best.
1:47
We hope that the decisions we make are the right ones.
1:49
And when things go wrong,
1:50
we worry that there are no right decisions at all.
1:53
We simply do not know.
1:57
But there is also wonder to be found in the unknown.
2:01
When our first son was born,
2:02
I left the hospital giddy with awe
2:04
that we had somehow conjured a new life into the world.
2:08
And when his brother was born with a heart defect four years later,
2:11
it made me realize how truly remarkable this actually is.
2:15
When we are first conceived,
2:17
just a bundle of cells, perfectly symmetrical.
2:21
On the outside of the embryo are tiny hairs called cilia.
2:26
Their job is to beat the amniotic fluid around the embryo.
2:30
This lays out the proteins that tell our organs how to form.
2:33
If the cilia are not working quite right, and this is what happened with Nadav,
2:37
the flow is erratic,
2:40
the proteins are in the wrong position
2:42
and our organs are malformed.
2:45
This happens in the span of three hours.
2:49
In time for dinner and a movie, your fate is sealed.
2:53
It absolutely blew my mind to learn this.
2:55
And had he not been born with a heart defect,
2:58
I never would have appreciated it.
3:00
Forget that anything ever goes wrong.
3:02
How incredible is it that anything ever goes right?
3:06
(Applause)
3:10
Of course, as the parent of a medically complicated child,
3:13
you don't have a lot of time for philosophy.
3:15
It was hard enough parenting a healthy kid --
3:18
suddenly we had to start thinking like doctors.
3:20
I realized how ambiguous the practice of medicine is.
3:24
Everything is open to interpretation.
3:26
We learned that doctors are not magicians or gods.
3:30
They have a certain level of expertise, but they, too, wrestle with the unknown.
3:34
The best doctors were the ones who were honest
3:37
and humble about what they didn't know.
3:40
And one thing doctors knew nothing about was how to parent our children.
3:44
As one doctor said to us,
3:46
"Never forget that he is our patient,
3:48
but he is your son."
3:50
It was our responsibility to show them the world,
3:53
and for us that meant traveling.
3:55
We pushed strollers all around New York.
3:57
We drove to a favorite beach in North Carolina.
4:00
We even got on a plane and flew to the West Coast
4:02
where we visited LEGOLAND and the San Diego Zoo.
4:06
In every place we tried to show them something new.
4:10
And then we had an opportunity to go even further, to Australia,
4:14
a country we loved,
4:15
right after Nadav's fourth birthday.
4:17
This was a place that was very special to us.
4:19
My mother is from there.
4:21
Tali lived there for four years.
4:22
But it wasn't an easy decision.
4:24
Nadav had just had his third surgery and it was a very long way away.
4:29
But after long conversations with his doctors,
4:31
we decided to go.
4:33
And it was fantastic --
4:37
for two weeks.
4:39
And then, two days before we were due to return home,
4:42
we noticed that Nadav was not looking well.
4:44
We took him to the hospital
4:46
where he was diagnosed with a clot in his circulation
4:49
that required emergency surgery.
4:51
The operation lasted ten hours, seven and a half on bypass.
4:57
He emerged alive, just barely.
5:00
And we found ourselves stranded on the other side of the world,
5:03
stuck in an unfamiliar hospital
5:04
with our son being cared for by people we didn't know.
5:07
I didn't think things could get any worse.
5:10
And then they did,
5:11
because we were called in for a "family meeting."
5:15
And family meetings are never good news.
5:18
This is the family room at the Children's Hospital in Westmead.
5:23
It's a terrible photo, but honestly, it is a terrible room.
5:27
Tali and I sat on the left,
5:28
bracing ourselves for the worst conversation of our lives.
5:32
On the other side were a bunch of strangers looking grim.
5:35
All we had was a box of tissues.
5:38
The doctor in charge cut to the chase.
5:41
"Nadav is not doing well," he said,
5:43
"and there are three things that could happen tonight.
5:47
First, he could improve.
5:49
And I'm telling you now, that's not going to happen.
5:53
Second, he could hold steady and that's what we're hoping for.
5:57
Third, he could deteriorate.
5:59
And in that case, there's nothing more we can do."
6:03
I had done a pretty good job to that point of holding things together,
6:07
but in that moment, I shattered into a million pieces.
6:09
But Tali remained calm.
6:12
She looked the doctor right in the eye and said,
6:14
"So what you're saying is that it's up to him?"
6:18
"Yes," he said. "I suppose that's right."
6:21
"Well, I can live with that," she said.
6:23
"I trust him."
6:25
What Tali trusted was something inside of Nadav himself.
6:29
She put her faith in the mystery of how we grow and heal.
6:33
The energy that causes the cilia to beat,
6:35
the map that tells our organs how to form.
6:38
She trusted the resilience of life.
6:41
That somehow Nadav’s body would find a way to heal.
6:46
He made it through that night and many more.
6:49
But he remained the sickest kid in the ward.
6:52
More than once, we were told that he was going to die.
6:55
Every few days in the intensive care unit,
6:57
a new doctor would come on call,
6:58
and we would bombard them with questions,
7:00
hungry for information,
7:02
and they would say, “Please be patient.
7:04
We have to get to know him."
7:06
And I realized they were saying something subtle and profound.
7:10
They were saying that they did not have the power to heal our son.
7:14
That only he could heal himself.
7:17
That their job was to give him the best opportunity to heal.
7:21
And to do that, they had to get to know him.
7:27
One day, the doctor in charge of the unit announced
7:29
that he was going to take Nadav outside.
7:32
This sounded absolutely ridiculous.
7:35
He was intubated, he was in critical condition.
7:38
It took 45 minutes to get him from his room
7:41
to the elevator down the hall.
7:43
But it was such a precious gift.
7:46
Not out of pity or palliative care,
7:48
but because he recognized that to heal is human.
7:53
To feel the wind in your hair, touch leaves, smell flowers,
7:55
to watch your brothers play, to be together as a family.
7:59
It was an amazingly human thing to do.
8:05
We were stuck in Australia for three months
8:07
until we found a procedure that could help him.
8:09
The problem was,
8:11
was that it was being developed at the Children's Hospital of Philadelphia
8:14
on the other side of the world,
8:16
which is why an incredible medical team
8:18
boarded a specially-equipped Gulfstream III in Philadelphia
8:21
and flew from Philadelphia to Oakland,
8:23
Oakland to Hawaii, Hawaii to Fiji,
8:25
Fiji to Sydney.
8:27
They landed like astronauts, wearing blue jumpsuits
8:29
with the American flag on their shoulders and chopped transport on the back.
8:34
They'd never transported anybody this sick this far.
8:37
They told us that if he died, they would land at the nearest airport.
8:41
But thanks in part to his resilience, they somehow made it back.
8:45
The procedure in Philadelphia was successful.
8:48
Nadav was no longer in critical condition,
8:50
but his underlying issues persisted.
8:52
The biggest problem was that there was still some fluid in his lungs,
8:56
and we couldn't leave until it cleared.
8:58
We spent six months in Philadelphia waiting for that lung to clear.
9:02
In that time, Nadav learned to walk again,
9:05
to talk again, to eat again, to smile again.
9:08
We took him outside as much as possible,
9:10
inspired by our time in Australia.
9:12
Every morning we would walk to a herb garden in a distant ward,
9:16
where we would pick fresh oregano for Nadav to eat for lunch, his favorite.
9:20
We wanted him to feel like a kid again,
9:22
because we knew how important it was to help him heal.
9:28
That lung did not clear, no matter what the doctors tried.
9:31
They were completely baffled.
9:32
Eventually, in August,
9:34
they decided to try a last-ditch procedure
9:36
to address his lymphatic system,
9:38
something that nobody quite understood.
9:41
And thankfully it worked.
9:43
His lungs cleared.
9:46
We were under no illusions about his condition.
9:49
He still had a single ventricle.
9:51
His body had actually grown all sorts of new connections,
9:54
hoping to rebalance his circulation.
9:57
And while I was amazed that his body was finding ways to heal itself,
10:01
we knew it was unsustainable.
10:03
Still, we were finally going home.
10:08
Before we left, though, there was one last moment of wonder.
10:12
We were asked to participate in a research study
10:14
examining the genetic causes of Nadav's condition.
10:18
And what we found was amazing.
10:20
Nadav had a malformation in his H5 gene
10:24
that had never been reported before.
10:26
It was completely unique.
10:27
Finally, we had scientific proof that our son was one of a kind.
10:31
(Laughter)
10:32
But here's what's even more astounding.
10:35
It turns out that Tali and I
10:37
both have the exact same mutation on each of our H5 genes.
10:43
Completely, perfectly identical,
10:45
never before reported, never before seen.
10:48
The genetic counselor suspected that we had a common ancestor
10:51
400 or 500 years ago.
10:54
I knew as soon as I met Tali that we were meant to be together.
10:57
Little did I know that this would reunite a centuries-old mutation
11:01
that would screw up our beloved son's heart.
11:04
But I wouldn't change any of it.
11:08
What choice did I have?
11:10
Should we not have gotten married?
11:11
Should we not have had kids?
11:14
Should we have cherry-picked embryos hoping to find one free of a defect?
11:19
Well, then we would be missing our son.
11:21
A son we loved.
11:23
And that would be the worst thing I could ever imagine.
11:28
(Applause)
11:36
I've already told you how this story ends.
11:39
Well, here it is.
11:40
Five months after we returned home,
11:42
Nadav died.
11:44
And when I held him in my arms that night,
11:46
I felt all sorts of emotion, pain, sadness, grief.
11:50
But the emotion I felt most of all was pride.
11:53
Parents live for these moments of pride,
11:55
graduation, getting married, having kids.
11:58
I realized that many of these things we would not experience with Nadav.
12:03
But in his five years,
12:05
together we experienced as many moments of pride
12:07
as most parents feel in a lifetime.
12:12
And then it was time to tell his brothers --
12:14
the one thing I had always feared.
12:18
When I think back to that moment,
12:19
I think back to conversations I would have with my own father when I was young.
12:23
We would go outside late at night, and we’d look at the stars.
12:28
He explained to me that we were seeing the stars
12:31
as they were millions of years ago.
12:33
That even though they appeared in the sky,
12:35
some of them may no longer exist.
12:38
I asked him what was between the stars and he said “nothing.”
12:43
I refused to accept this.
12:44
We argued about it endlessly.
12:46
I could not imagine such a thing as nothing.
12:49
My father's own father had died when he was just 16 years old.
12:54
I grew up afraid of death,
12:56
terrified of the concept of nothingness.
13:00
And when it came time to tell Nadav's brothers that he had died,
13:03
I felt the same sort of dread.
13:07
As a father, I always felt it was my job to teach my children about the world.
13:12
But until Nadav was born,
13:13
I didn't realize how much our children teach us.
13:17
Our five years together taught me what it means to be human.
13:22
It revealed unexpected wonders.
13:25
And it made me realize that there are some things we will never understand.
13:30
And so when the time came,
13:32
I told his brothers the truth as best I could.
13:35
"Your brother has died," I said,
13:37
confirming, against my will, the empty darkness
13:41
that surrounds every shining star.
13:45
Thank you.
13:46
(Applause)
