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

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1. 0:04Hi, my name is James.
2. 0:06I live in Brooklyn, New York, with my wife Tali,
3. 0:08and I'm a dad.
4. 0:10And when people hear that, they always ask me the same question.
5. 0:13How many kids do you have?
6. 0:15Well, the answer is three.
7. 0:17Three amazing boys.
8. 0:19And then they say, "How old are they?"
9. 0:22And that's where things get a little complicated
10. 0:24because one of them, Nadav,
11. 0:27was born with a heart defect
12. 0:28and died nine years ago, at the age of five.
13. 0:32When I tell people this, they always have the same reaction.
14. 0:35"That's the worst thing I could ever imagine."
15. 0:39In fact, some of you are probably feeling that right now.
16. 0:42But they don’t realize what a privilege it was to be his father
17. 0:46and how grateful I am for having had that experience.
18. 0:49And today I'm going to explain why.
19. 0:52Nadav was born with a single ventricle,
20. 0:55the result of a condition called heterotaxy.
21. 0:57It required three surgeries before the age of four.
22. 1:01The first one at only five days old.
23. 1:04But there was no fixing his heart.
24. 1:06These operations were merely palliative --
25. 1:08a series of sophisticated hacks designed to stabilize his circulation.
26. 1:12The hope was to get him to teenage years
27. 1:14where he might be eligible for a heart transplant.
28. 1:17Let me tell you what it's like to get that news.
29. 1:20It is absolutely terrifying
30. 1:23because it makes you realize how little you know.
31. 1:26I didn't know whether these operations would be a success.
32. 1:29I didn't know whether Nadav would live or die.
33. 1:32And worst of all, if he did die,
34. 1:34I didn't know how I would tell his brothers.
35. 1:38Parenting is all about making choices.
36. 1:41We wrestle with the unknown as best we can,
37. 1:44hoping that things will work out for the best.
38. 1:47We hope that the decisions we make are the right ones.
39. 1:49And when things go wrong,
40. 1:50we worry that there are no right decisions at all.
41. 1:53We simply do not know.
42. 1:57But there is also wonder to be found in the unknown.
43. 2:01When our first son was born,
44. 2:02I left the hospital giddy with awe
45. 2:04that we had somehow conjured a new life into the world.
46. 2:08And when his brother was born with a heart defect four years later,
47. 2:11it made me realize how truly remarkable this actually is.
48. 2:15When we are first conceived,
49. 2:17just a bundle of cells, perfectly symmetrical.
50. 2:21On the outside of the embryo are tiny hairs called cilia.
51. 2:26Their job is to beat the amniotic fluid around the embryo.
52. 2:30This lays out the proteins that tell our organs how to form.
53. 2:33If the cilia are not working quite right, and this is what happened with Nadav,
54. 2:37the flow is erratic,
55. 2:40the proteins are in the wrong position
56. 2:42and our organs are malformed.
57. 2:45This happens in the span of three hours.
58. 2:49In time for dinner and a movie, your fate is sealed.
59. 2:53It absolutely blew my mind to learn this.
60. 2:55And had he not been born with a heart defect,
61. 2:58I never would have appreciated it.
62. 3:00Forget that anything ever goes wrong.
63. 3:02How incredible is it that anything ever goes right?
64. 3:06(Applause)
65. 3:10Of course, as the parent of a medically complicated child,
66. 3:13you don't have a lot of time for philosophy.
67. 3:15It was hard enough parenting a healthy kid --
68. 3:18suddenly we had to start thinking like doctors.
69. 3:20I realized how ambiguous the practice of medicine is.
70. 3:24Everything is open to interpretation.
71. 3:26We learned that doctors are not magicians or gods.
72. 3:30They have a certain level of expertise, but they, too, wrestle with the unknown.
73. 3:34The best doctors were the ones who were honest
74. 3:37and humble about what they didn't know.
75. 3:40And one thing doctors knew nothing about was how to parent our children.
76. 3:44As one doctor said to us,
77. 3:46"Never forget that he is our patient,
78. 3:48but he is your son."
79. 3:50It was our responsibility to show them the world,
80. 3:53and for us that meant traveling.
81. 3:55We pushed strollers all around New York.
82. 3:57We drove to a favorite beach in North Carolina.
83. 4:00We even got on a plane and flew to the West Coast
84. 4:02where we visited LEGOLAND and the San Diego Zoo.
85. 4:06In every place we tried to show them something new.
86. 4:10And then we had an opportunity to go even further, to Australia,
87. 4:14a country we loved,
88. 4:15right after Nadav's fourth birthday.
89. 4:17This was a place that was very special to us.
90. 4:19My mother is from there.
91. 4:21Tali lived there for four years.
92. 4:22But it wasn't an easy decision.
93. 4:24Nadav had just had his third surgery and it was a very long way away.
94. 4:29But after long conversations with his doctors,
95. 4:31we decided to go.
96. 4:33And it was fantastic --
97. 4:37for two weeks.
98. 4:39And then, two days before we were due to return home,
99. 4:42we noticed that Nadav was not looking well.
100. 4:44We took him to the hospital
101. 4:46where he was diagnosed with a clot in his circulation
102. 4:49that required emergency surgery.
103. 4:51The operation lasted ten hours, seven and a half on bypass.
104. 4:57He emerged alive, just barely.
105. 5:00And we found ourselves stranded on the other side of the world,
106. 5:03stuck in an unfamiliar hospital
107. 5:04with our son being cared for by people we didn't know.
108. 5:07I didn't think things could get any worse.
109. 5:10And then they did,
110. 5:11because we were called in for a "family meeting."
111. 5:15And family meetings are never good news.
112. 5:18This is the family room at the Children's Hospital in Westmead.
113. 5:23It's a terrible photo, but honestly, it is a terrible room.
114. 5:27Tali and I sat on the left,
115. 5:28bracing ourselves for the worst conversation of our lives.
116. 5:32On the other side were a bunch of strangers looking grim.
117. 5:35All we had was a box of tissues.
118. 5:38The doctor in charge cut to the chase.
119. 5:41"Nadav is not doing well," he said,
120. 5:43"and there are three things that could happen tonight.
121. 5:47First, he could improve.
122. 5:49And I'm telling you now, that's not going to happen.
123. 5:53Second, he could hold steady and that's what we're hoping for.
124. 5:57Third, he could deteriorate.
125. 5:59And in that case, there's nothing more we can do."
126. 6:03I had done a pretty good job to that point of holding things together,
127. 6:07but in that moment, I shattered into a million pieces.
128. 6:09But Tali remained calm.
129. 6:12She looked the doctor right in the eye and said,
130. 6:14"So what you're saying is that it's up to him?"
131. 6:18"Yes," he said. "I suppose that's right."
132. 6:21"Well, I can live with that," she said.
133. 6:23"I trust him."
134. 6:25What Tali trusted was something inside of Nadav himself.
135. 6:29She put her faith in the mystery of how we grow and heal.
136. 6:33The energy that causes the cilia to beat,
137. 6:35the map that tells our organs how to form.
138. 6:38She trusted the resilience of life.
139. 6:41That somehow Nadav’s body would find a way to heal.
140. 6:46He made it through that night and many more.
141. 6:49But he remained the sickest kid in the ward.
142. 6:52More than once, we were told that he was going to die.
143. 6:55Every few days in the intensive care unit,
144. 6:57a new doctor would come on call,
145. 6:58and we would bombard them with questions,
146. 7:00hungry for information,
147. 7:02and they would say, “Please be patient.
148. 7:04We have to get to know him."
149. 7:06And I realized they were saying something subtle and profound.
150. 7:10They were saying that they did not have the power to heal our son.
151. 7:15That only he could heal himself.
152. 7:17That their job was to give him the best opportunity to heal.
153. 7:21And to do that, they had to get to know him.
154. 7:27One day, the doctor in charge of the unit announced
155. 7:29that he was going to take Nadav outside.
156. 7:32This sounded absolutely ridiculous.
157. 7:35He was intubated, he was in critical condition.
158. 7:38It took 45 minutes to get him from his room
159. 7:41to the elevator down the hall.
160. 7:43But it was such a precious gift.
161. 7:46Not out of pity or palliative care,
162. 7:48but because he recognized that to heal is human.
163. 7:53To feel the wind in your hair, touch leaves, smell flowers,
164. 7:55to watch your brothers play, to be together as a family.
165. 7:59It was an amazingly human thing to do.
166. 8:05We were stuck in Australia for three months
167. 8:07until we found a procedure that could help him.
168. 8:09The problem was,
169. 8:11was that it was being developed at the Children's Hospital of Philadelphia
170. 8:14on the other side of the world,
171. 8:16which is why an incredible medical team
172. 8:18boarded a specially-equipped Gulfstream III in Philadelphia
173. 8:21and flew from Philadelphia to Oakland,
174. 8:23Oakland to Hawaii, Hawaii to Fiji,
175. 8:25Fiji to Sydney.
176. 8:27They landed like astronauts, wearing blue jumpsuits
177. 8:29with the American flag on their shoulders and chopped transport on the back.
178. 8:34They'd never transported anybody this sick this far.
179. 8:37They told us that if he died, they would land at the nearest airport.
180. 8:41But thanks in part to his resilience, they somehow made it back.
181. 8:45The procedure in Philadelphia was successful.
182. 8:48Nadav was no longer in critical condition,
183. 8:50but his underlying issues persisted.
184. 8:53The biggest problem was that there was still some fluid in his lungs,
185. 8:56and we couldn't leave until it cleared.
186. 8:58We spent six months in Philadelphia waiting for that lung to clear.
187. 9:02In that time, Nadav learned to walk again,
188. 9:05to talk again, to eat again, to smile again.
189. 9:08We took him outside as much as possible,
190. 9:10inspired by our time in Australia.
191. 9:12Every morning we would walk to a herb garden in a distant ward,
192. 9:16where we would pick fresh oregano for Nadav to eat for lunch, his favorite.
193. 9:20We wanted him to feel like a kid again,
194. 9:22because we knew how important it was to help him heal.
195. 9:28That lung did not clear, no matter what the doctors tried.
196. 9:31They were completely baffled.
197. 9:32Eventually, in August,
198. 9:34they decided to try a last-ditch procedure
199. 9:36to address his lymphatic system,
200. 9:38something that nobody quite understood.
201. 9:41And thankfully it worked.
202. 9:43His lungs cleared.
203. 9:46We were under no illusions about his condition.
204. 9:49He still had a single ventricle.
205. 9:51His body had actually grown all sorts of new connections,
206. 9:54hoping to rebalance his circulation.
207. 9:57And while I was amazed that his body was finding ways to heal itself,
208. 10:01we knew it was unsustainable.
209. 10:03Still, we were finally going home.
210. 10:08Before we left, though, there was one last moment of wonder.
211. 10:12We were asked to participate in a research study
212. 10:14examining the genetic causes of Nadav's condition.
213. 10:18And what we found was amazing.
214. 10:20Nadav had a malformation in his H5 gene
215. 10:24that had never been reported before.
216. 10:26It was completely unique.
217. 10:27Finally, we had scientific proof that our son was one of a kind.
218. 10:31(Laughter)
219. 10:32But here's what's even more astounding.
220. 10:35It turns out that Tali and I
221. 10:37both have the exact same mutation on each of our H5 genes.
222. 10:43Completely, perfectly identical,
223. 10:45never before reported, never before seen.
224. 10:48The genetic counselor suspected that we had a common ancestor
225. 10:51400 or 500 years ago.
226. 10:54I knew as soon as I met Tali that we were meant to be together.
227. 10:57Little did I know that this would reunite a centuries-old mutation
228. 11:01that would screw up our beloved son's heart.
229. 11:04But I wouldn't change any of it.
230. 11:08What choice did I have?
231. 11:10Should we not have gotten married?
232. 11:11Should we not have had kids?
233. 11:14Should we have cherry-picked embryos hoping to find one free of a defect?
234. 11:19Well, then we would be missing our son.
235. 11:21A son we loved.
236. 11:23And that would be the worst thing I could ever imagine.
237. 11:28(Applause)
238. 11:36I've already told you how this story ends.
239. 11:39Well, here it is.
240. 11:40Five months after we returned home,
241. 11:42Nadav died.
242. 11:44And when I held him in my arms that night,
243. 11:46I felt all sorts of emotion, pain, sadness, grief.
244. 11:50But the emotion I felt most of all was pride.
245. 11:53Parents live for these moments of pride,
246. 11:55graduation, getting married, having kids.
247. 11:58I realized that many of these things we would not experience with Nadav.
248. 12:03But in his five years,
249. 12:05together we experienced as many moments of pride
250. 12:07as most parents feel in a lifetime.
251. 12:12And then it was time to tell his brothers --
252. 12:14the one thing I had always feared.
253. 12:18When I think back to that moment,
254. 12:19I think back to conversations I would have with my own father when I was young.
255. 12:23We would go outside late at night, and we’d look at the stars.
256. 12:28He explained to me that we were seeing the stars
257. 12:31as they were millions of years ago.
258. 12:33That even though they appeared in the sky,
259. 12:35some of them may no longer exist.
260. 12:38I asked him what was between the stars and he said “nothing.”
261. 12:43I refused to accept this.
262. 12:44We argued about it endlessly.
263. 12:46I could not imagine such a thing as nothing.
264. 12:49My father's own father had died when he was just 16 years old.
265. 12:54I grew up afraid of death,
266. 12:56terrified of the concept of nothingness.
267. 13:00And when it came time to tell Nadav's brothers that he had died,
268. 13:03I felt the same sort of dread.
269. 13:07As a father, I always felt it was my job to teach my children about the world.
270. 13:12But until Nadav was born,
271. 13:13I didn't realize how much our children teach us.
272. 13:17Our five years together taught me what it means to be human.
273. 13:22It revealed unexpected wonders.
274. 13:25And it made me realize that there are some things we will never understand.
275. 13:30And so when the time came,
276. 13:32I told his brothers the truth as best I could.
277. 13:35"Your brother has died," I said,
278. 13:37confirming, against my will, the empty darkness
279. 13:41that surrounds every shining star.
280. 13:45Thank you.
281. 13:46(Applause)