How Agile helped to save my child's life

September, 10th, 2014 - one of those days a father will never forget. Nine months waiting and the water broke. It Looks like it's happening again. Fernando, our second son, arrived a couple hours later. Party mode on, friends and family gathering around us and we had every reason to celebrate. It's funny how life is unpredictable. Five days later, I would receive the most frightening news of my life and now, almost three years after that, it seems it was not that bad at all, but it really was at that time, and I'll never forget the day my life changed forever.

It was an ordinary day when I got a call from my wife saying:

- Something happened here, and I'm scared. Fernando choked, and it took a minute to bring him back. Come back home as soon as you can.

Got back home and he seemed to be ok. Three hours later, it happened again. This time it took us a while to realize what was happening. He was blue, not breathing and not moving, and we tried everything we knew to bring him back. It was not working at all. In my head, I was thinking "not today, not here, not with us.".

I know it may sound the end of the world if you're reading this right now and have kids. You're probably asking yourself what would you do, but let me be honest: nothing prepares you for that, and yes, it's the end of the world, or at least the world as you know it.

By chance, we used to live in front of one the most respected hospitals in Rio de Janeiro, Brazil. It's literally across the street. I screamed: run as fast as you can. Let's take him to the hospital right now! Living on the 7th floor of a tall building, I know the elevator is never there when I need it. This time, it was right there. In a minute or two we arrived at the hospital. Fernando was in our arms, not showing any vital signs. Probably 5-7 minutes passed. At this point, you don't think anymore. You're too desperate to think. Call it luck or whatever you want: we saw a group of doctors meeting at the front door. It's kind of blurred in our minds what happened. What I remember is that I saw, through the glass, a Team of doctors working hard around Fernando. I couldn't see him. At a certain point, they all took a step back, and someone in the room said: "it's a miracle.". Later we've been told we saved him by 30 seconds. Another 30 seconds and he would be gone. Thanks to the elevator, I mumbled. Fernando was taken to a neonatal ICU.

The day after, we heard the news. Straightforward and with no filter: Fernando had a rare genetic syndrome. He may not survive, the doctor said. He continued: he's not gonna work or have a normal life. Some part of his DNA is missing, and this is as bad as it sounds. No possible cure or treatment.

Devastated is the right word. Or maybe there's no word to express how we felt. 14 days at ICU and Fernando was back home. Because of the syndrome, he was so fragile that his weakened muscles couldn't even help him to swallow or breathe right. He choked at least 20 times. With no intervention, he would definitely die. We couldn't sleep or leave him alone. Sometimes we would wake up in the middle of the night with that sound of a baby choking. What would happen if we were too tired to wake up? Fortunately, we quickly learned what to do: open his mouth with a finger and allow him to slowly be able to breathe again.

Agile is my life. So if we were determined to save our child's life, we would have to use everything we knew to accomplish our mission. We had to improvise. We've got no option. We have to do it.

Daily Sprints. Yes, exactly that: every day was a sprint, and my goal was to run experiments to help him to improve his condition. Build, measure, learn.

Fernando was too weak to eat. He was losing weight fast, and he was in a severe condition. Doctors said we should insert a feeding tube or he would die. The instant benefit: no choking anymore. The problem: muscles would not develop and he would need that for a long time, and also learn how to speak would be really hard. We did not accept it. I said I could fix it, and doctors gave me a week or two before the surgery. If we fail, I thought, we would have to accept it to save his life again.

Ok, then. Daily sprints, right? Every day I would feed him in a different position, with a different quantity of milk, a different mix of water and milk, trying a different process before, during and after feeding and taking mental notes. Daily sprints helped me to continuously learn, based on my mistakes and failed experiments. I failed a lot, but finally, I've found a way to do it. It worked. Sprint after sprint, I increased the amount of milk, without telling my wife and our doctors. I knew how to feed him, and I wanted to surprise everyone. He gained weight and doctors said: Not sure what you did, but you've done well. Feeding tubes are not needed anymore. 

When you're in a situation like this, you don't have time to stop or relax. We still had to work hard to overcome the choking problem. Sprint after sprint, we tried to understand what caused the choking and we ran several experiments to see which ones would work. We understood the pattern. It took a while, but then the choking problem was under control. Fernando was three months old when choking episodes were finally gone.

The life and death situation was history after that. We've been running longer sprints since that. Almost three years passed, and this is how he learned to eat solid food, to communicate (not with words so far, but with clear gestures), to crawl, to use the iPad, to play videos on YouTube, to walk (it just happened a month ago and probably was one the best days of my life) and this is how we will keep learning as a Team.

Sprint after sprint, we've been inspecting and adapting to use what we learned to improve our experiments and give him the best support he can get. Now Fernando is a happy kid, always smiling, crazy about Mickey Mouse, and curious enough to spend countless hours playing with his toys. It's a learning experience like nothing I had in my life, and there's a lot to learn and to explore. In these almost three years, we never gave up, and we never slowed down. The next Sprint is always there, waiting for you. 

My goal with this article is to reach parents out there, scared, feeling lost and not knowing how to deal with a situation like this. There's always a way. No matter what, you've got do your best and learn as fast as you can.

I've got to go now, because it's Sunday night and next sprint starts tomorrow. Don't know exactly what we'll learn in the upcoming years, but something tells us it's going to be an amazing experience. Can't wait to see.