When Ari Schultz’s parents, Mike and Erica, learned that their soon-to-be born son had fetal critical aortic stenosis (blockage of a valve in the left ventricle of his heart) they were devastated but determined to help him the best they could. So they came to Boston Children’s Advanced Fetal Care Center (AFCC), which performed two fetal cardiac interventions on Ari in-utero, making him the only person in the world to have two successful cardiac interventions pre-birth. Ari was then brought into the world and continued treatment at Boston Children’s.
Since learning about Ari’s heart condition at 18 weeks gestation, Mike has been writing a blog, echoofhope.org, to keep family and friends up to date on his son’s condition. But Mike’s writing is different than what you find on most patient blogs; he approaches this serious and scary topic with humor. By writing funny, first-person accounts of life through Ari’s eyes, Mike gives his son a voice and personality unlike any other baby, and a much needed smile to people close to Ari and his family. We appreciated his style so much we asked him to write a piece just for Thriving.
David Frost landed Richard Nixon.
Barbara Walters landed Fidel Castro.
James Lipton landed Jimmy Stewart, Al Pacino, Marlon Brando, Jack Lemon, Christopher Walken, Clint Eastwood and more all at once.
But we’ve outdone them all! Yes, that’s right, Thriving has landed the most sought after celebrity interview in all of news media. (Take that, 60 Minutes.)
Indeed, we’re proud and honored to announce this interview with Ari Francis “Danger” Schultz. While Ari needs no introduction for most, a few of you may have been vacationing in Antarctica for the last little while, so here’s a recap:
- Ari was the first person ever to have 2 successful fetal cardiac interventions before he was born.
- He first wrote his own blog post, the story of his birth on February 16, 2012, at the age of 4 days old from his bed right here at the Boston Children’s Hospital Cardiac Intensive Care Unit.
- He’s a full-time international spy, professional wrestler and pop icon, frequently appearing in shows such as Who’s Line Is It Anyway and magazines such as Time.
- He recently delivered the commencement address at Harvard Medical School in the middle of his recovery from major open-heart surgery.
While he maintains residences in Los Angeles, Rome and Moscow (he likes borscht), he loved Boston so much when he was born, he’s now back vacationing at Boston Children’s cardiac unit.
Ari, how’s life been treating you these days?
Well, you might say after two fetal cardiac interventions before birth, two balloon catheters shortly thereafter, and a major open-heart surgery at 12 weeks old that it’s been a bit of a grind. But you play the cards you’re dealt. Win the boobie prize? Make breast milk. That’s what I say.
At the moment I’m in the weeds, but whaddayagonnado? James Stockdale was a prisoner of war for eight years in Vietnam. He was tortured year after year after year. In Good to Great, he said, “I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.”
Stockdale went on to win the Medal of Honor, become a vice admiral in the navy, President of the Citadel, a fellow at the Hoover Institution at Stanford University and candidate for Vice-President of the United States.
I’ll have him beat by the time I finish 4th grade. For now, the battle continues.
What’s your experience been like here at Boston Children’s?
Combine Lake Como’s beauty, New York’s restaurant scene and Rio’s nightlife. That’s 8 East, the cardiac floor here at Boston Children’s, in a nutshell.
Seriously, I don’t mean to be a shill for you people, but I owe my life to this place. Saying, “two thumbs up” and flashing my gummy smile doesn’t quite capture it.
What has your biggest surprise in this whole process?
Nothing much intimidates me, but my parents were, to put it lightly, pretty freaked out when we got the diagnosis. They were worried that they’d end up facing with some big, self-important cardiologist who would strong-arm them into some surgery that would be more feather in his cap than the best option for me.
Then we met Wayne Tworetzky. Wayne-O. The Waynester. He’s my cardiologist. He’s also a professor at Harvard Medical School, a honcho at the best pediatric cardiology hospital in existence, and flies all over the world teaching everyone about the whats, hows, and whys of fetal cardiac intervention.
He even thinks he’s funny. Sure, Wayne. You’re a regular Shecky Green.
Anyway, you’d think you’d have to go through six layers of administration to get to him. Nope. Dad sends him a text, he texts back.
You’d think he’d have a big head. Nope. He listens more than he talks. He never rushes us out. He cares.
On his days off, he swings by to see me. The phone rings at midnight in my room. It’s W-Money checking on me. Ring ring ring…“How’s big Ari?”
And the nurses! They’re ridiculously good at what they do. They’re the glue that holds this place together. Dare I say, they make me want to be a better man (if that’s even possible, right?).
I expected world-class science. I expected cutting edge technology and medicines. Indeed, I expected the best care in the world.
But I never expected all the care in the care.
What’s the secret to life?
Eat more borscht.
You’ve done so much already. What’s next?
We’re all working hard to figure out the best path forward for me and my wonky heart. Every day we ask, “What’s up with Ari’s heart,” and “What should we do next,” and my medical team shakes the Magic 8 Ball to get an answer. (Sorry for spilling your #1 in the world pediatric cardiology secrets, guys.)
Unfortunately, we keep getting, “Reply hazy, try again,” and “Better not tell you now.”
In any case, it’s likely we’ll see a mix of medications, echocardiograms, trips to the catheter lab and open heart surgeries.
Look, I’d like to make it sound better than it is, but real life isn’t always a bag of chips and a box of Ding Dongs. One of the things I really like about the Boston Children’s team is that they’ve been honest with me.
(Doc, will I ever play the violin again? Just kidding…)
They were straight shooters about my condition, my options, and the potential outcomes. Look, if I didn’t have the fetal interventions, I wouldn’t have a shot at having a long, two-ventricle life. And I might not be here at all.
While short-term we have a lot of work to do, when we shake the Magic 8 Ball and ask, “Big picture, will I be OK? Play sports? Grow old? Have kids?” we get “Outlook good,” and “Signs point to yes.”
I’m here. I’m fighting. And I’m glad I’m doing it.
Oh, and once it warms up my Uncle Dave and I are going Tow-in Surfing.
Michael Jackson had the world in silver gloves. Madonna in ripped fishnets. Superman in blue Underoos. How will you have the world to emulate you?
I have a pretty powerful effect on women. (Hello ladies. Plenty of me to go around.)
Dear women of the world, I will be forever grateful if, at your 18 week ultrasound, you ask the following questions of your ultrasound technicians and doctors:
- Do you see four chambers in the baby’s heart?
- Are there two upper chambers (left and right atria) with valves controlling blood flow into the heart?
- Are there two lower chambers (left and right ventricles) with valves controlling blood flow out to the body (aortic) and lungs (pulmonary)?
- Do the two valves and vessels (aorta and pulmonary arteries) exit the heart in a crossing fashion?
- Are the walls between the lower chamber of the heart intact?
- Is the baby’s heart normal?
The majority of kids who have in-utero critical aortic stenosis with evolving hypoplastic left heart, my initial diagnosis, are not detected. And if they are, they don’t have the straight story on the outlook for success and a long, healthy life (both are good).
So let it be written. So let it be done.
Oh, and get a tattoo of my name and a color sketch of Snoopy.
You can follow Ari’s ongoing journey on his blog and receive updates by email by visiting www.echoofhope.org.
P.S. As we were talking with Ari last week, the forces of evil were gathering and plotting. A few days ago, they sprung from the shadows and launched a new attack. Ari is back in cardiac intensive care awaiting another open heart surgery. He has a long fight, but even with this setback, his chances are still good.