Echo of Hope

Last night was the American Heart Associations annual gala Heart Ball. Ari was the featured heart warrior of the night. Here is a copy of my speech about Ari, along with the video Erica and I made to share a bit of Ari with everyone. It was a true honor to be a part of such a great event, and to get the opportunity to recognize Dr. Wayne Tworetzky and Dr. Ram Emani.

I posted the video up top here, but if you can stand waiting, watch it below where it appeared in the speech.

Also, it’s not in the speech as they noted it another time, but my next book, Insight Selling, just came out this week. For all books sold through May 10, we are donating all of our royalties to the American Heart Association’s fund for congenital heart defect research.

And here we were before we headed out to the event:

***

Thanks everybody. It’s an honor to be here in the company of such great people, speaking on behalf of my son Ari who I’m so pleased many of you were able to meet earlier. Tonight I’m here to tell you a bit of his story.

In 2009, my beautiful wife Erica and I moved on to Lake Boon in Stow, Massachusetts because we wanted to have kids and watch them grow up loving life on the lake. We used to talk about zooming them around on sleds on the ice like we saw the other parents doing.

We tried for a while to get the family started, and it wasn’t exactly happening. Then we got pregnant and were thrilled. Until we had a miscarriage, and our world came crashing down. We were devastated, but after a bit, we were ready to start again, but we were nervous that it was going to be difficult.

Then, bam! First try, pregnant! Couldn’t have been more thrilled. Happened just like magic. Maybe this magic kid will be nice and easy. If we only knew then how it was going to play out.

I remember going to our 12 week ultrasound and hearing the heartbeat for the first time. You know, it kind of sounds a bit like siren.

Made me daydream a bit because the sound of a siren always gives me the chills. I’ve always been in awe of sirens because it means brave heroes are on a truck, racing to aid someone in crisis.

On September 18, 2011 at our 18 week ultrasound, we learned our baby was a boy, and that he had a special heart.

On that day, we learned about fetal critical aortic stenosis with evolving hypo plastic left heart. In other words, part of our son’s heart was dying as we watched.

Shock doesn’t even describe it. It was…surreal. Like we weren’t even there, like it was a movie.

Makes me think about this movie I love where a 40 year old battleship is about to be retired. The old girl’s on its last leisurely tour around the world, about to become part of a naval museum. But somewhere far out at sea as everyone was relaxing, the dusty old lights start flashing red and an alarm rings out. “Action stations, action stations, set condition 1 throughout the ship. This is not a drill. Repeat. Action stations, action stations, set condition 1 throughout the ship. This is not a drill.”

It wasn’t a drill. There was enemy inbound. They intended to attack.

But the ship had no ammunition. They were sitting ducks. All they could do was send out a distress call, hope someone heard, put the sirens on, and started racing through the night to save them.

This was us in that OBs office.

Close your eyes if you would. Picture child you love in a happy moment.

Just keep those thoughts in your head. I can see you all smiling. I can imagine there’s nothing you wouldn’t do for these little ones.

Now most of us here tonight, to one degree or another, are people of means; we can provide clothes and food and more. But when we heard our son had a deadly heart defect, we were powerless…completely at the mercy of others.

Fortunately, somewhere in the night there were heroes on a truck, sirens blazing, heading toward us at top speed in our hour greatest of need.

For my family, the cardiology team at Boston Children’s Hospital didn’t turn on the siren, didn’t get on that truck on September 18, 2011.

They got on 13 years earlier when they opened the Advanced Fetal Care Center.

You know, there’s a great Wayne Gretzky quote that’s always stuck with me. He said, “I skate to where the puck is going to be, not where it has been.”

Yes, for my family, Drs. Tworetzky, Emani, Lock, Marshall turned on the siren in 1999 and, little did we know, began racing at top speed towards my son…towards where he was going to be.

And good thing, too, because they just barely made it! Ari is the very first person in the world to have 2 successful heart surgeries before he was born. Because of this innovation, we took Ari home at 4 weeks old with not with half a heart, but a whole one. Here he is at about 6 weeks old.

Soon thereafter, though the alarm rang out again, and the cardiology team went to work, having anticipated years before where this puck might go.

Starting then, in two major open heart surgeries, Ari’s had 3 of his 4 heart valves either moved or replaced. And he’s had scar tissue cut out his heart twice.

You know, I completely missed this chapter in “What to expect the first year.”

For the 2^nd surgery, Drs. Ram Emani and Wayne Twortezky, came to talk to us about the options for mitral valve replacement for 18 week old babies. Wayne said, “Problem is medical device companies don’t make replacement mitral valves for kids his age. So if we put in what we have had to work with up until now, he’ll probably need open heart surgery again in only months.”

Ram said, “We have a new option, though. We take a Melody valve, it’s not built for the mitral position and not FDA indicated for this use, we turn it upside down and see if we can’t shove it in because it’s a big valve. If we can fit it, the benefit is it’s expandable by balloon in the cath lab. It might give him the best shot at fewer surgeries and growing bigger.

So we asked, ‘Okay, this is experimental. How many times have you done it before?

“4” he says. We asked, “How many times has it ever been done before?”

“4” he says.

“How have they been going?” we asked. He said, “Well, I get better every time.”

Comforting, right?

We went for it. Here’s Ari’s chest x-ray soon after surgery. The big honeycomb thing in the middle is that valve.

It was touch and go for a while, but Ari turned the corner and we went home for a largely uneventful 6 months. That is, if you consider a surgically implanted feeding tube and rushing to the hospital with acute methadone withdrawal largely uneventful. Anyway, Ari starts breathing much faster. His new mitral valve is, indeed, now too small for him, choking off his blood supply, and chocking off his air.

Since we have that innovative valve, as Drs. Emani and Tworetzky predicted, we go in for a cath procedure instead of an open heart surgery. We have the cath on a Monday. By Saturday, instead of Ari still being in the Cardiac ICU with a breathing tube and on narcotics, he’s was here:

Yep, cath on Monday. Swim class on Saturday.

Drs. Tworetzky, Emani. Can you please give everyone a quick wave? Thanks.

Thank god for the cardiology team at Boston Children’s Hospital and the AHA, racing through the night not to where puck has been, but to where it’s going.

These days, Ari’s addicted to sports. Baseball, football, hockey, soccer, golf and especially basketball. Non stop.

He just had a 3 hour developmental review. He tested at 3 and 4 year old levels in…everything.

He’s into 70s music. We sing Ho Ho Ho It’s Magic at least 10 times a day.

Most of all, he’s a sweet little boy and loves his little sister, Lexi.

One last thing about Ari. He’s been immortalized in the book Insight Selling. The dedication for Insight Selling – which is just out this week – reads “For Ari, and his congenital heart defect warrior brothers and sisters everywhere.”

In the book, in the section where we break down how buyers make decisions – we used Ari’s story as the example. I could have written anything, but I wanted to use the platform of a major book to raise awareness about what it’s like making life altering decisions after getting a difficult heart defect diagnosis.

Just barely 2 years old, and he’s already famous.

I’m just about done, but before I finish up with a few last words, here’s a little video Erica and I made just a few days ago to share a bit of Ari with you…

Ari, by the way, has names for these songs now. It’s Magic is the baby Ari video song, and Home, is, wait for it, the ‘other’ baby Ari video song.

Now, one more time, if you would, close your eyes. For a moment, listen to the silence.

Now hear a siren coming on in the night. You can see the lights flashing as a truck approaches. It’s just about to fly past you, racing towards a family in cardiac crisis.

As it races by you can see the people on the truck. But it’s not just the cardiology team you know. They’re there, but they’re holding on on back, ready to jump off and run into the burning house as they do every day to save everyone. But they’re not driving. You see, they can’t get there unless…you take them.

All the medical professionals in this room are heroes, but they’re not the only ones. It’s you. You hold Ari’s life, and the lives of so many in your hands; you have the choice to do so – and from we simple parents who found ourselves in need of heroes when alarms went off, we thank you doctors for saving our son, the AHA for funding innovative, life saving research, and to all of you for your generosity that makes everything possible. Thank you.