Taking the world by storm: Keeping up with Ari Schultz

Ari Schultz

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.)

Ari and his father, Mike

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:

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.

Ari and his mother, Erica

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?”

All my doctors and NPs care. Sitaram “MacGuyver” Emani, Audrey Marshall, Terra LaFranchi, and whole team treat the rents and me like guests at the Ritz.

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.

Ari at Boston Children’s

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.”

Bummer.

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.

Later peoples.

You can follow Ari’s ongoing journey on his blog and receive updates by email by visiting www.echoofhope.org.

For more information about fetal cardiology and resources for expectant parents, visit bostonchildrens.org/fetalheart.

  • Donna

    Ari, You are my hero! Can’t wait to watch you and your Uncle David tow-in surf!! 

  • Auntie Sandi

    Auntie Sandi calls you her “Super Hero” and you are by far all that and more. Love you to pieces, “you handsome devil you”!

  • Pat

    Ari did have his second open heart and he is still amazing us all. I love his attitude, stamina, guts, charming smile and sparkling eyes. Keep up the good work and thank you Children’s Hospital for all you have done and are doing.

  • Weljao

    Good luck!!! Boston Children’s Hospital Cardiac unit saved me as a newborn back in 1952

  • Jill Gent

    Kudos to Boston Children’s for the top notch care you have given to baby Ari and his parents.  Not only am I praying constantly for Ari, Erica and Mike, but the entire cardiac team caring for them has been in my prayers.  Keep up the great work!

  • Tiffany

    Wow gonna have to follow the blog.  My little guy Chase will be celebrating his 3rd Bday in a few days and we are so proud of him.  I love these little fighters.  He also had fetal surgery at UCSF for the same thing.  His LV was large.  He ended up with a Ross Kono and well are removing a lot of hardware from a hybrid procedure done then pealed scar tissue from the inside of the LV.  All from an amazing Dr we call Superman :0) who had hands that look like baseball gloves.  Still I have days that I can barely wrap my mind around it.  Boy did I ever think I would know as much as I do about the human heart in my lifetime, not even close.  The best to Ari and family 🙂  

  • JeremyB

    I loved this.  I wish this little boy and his family nothing but the best in life (hopefully a long fulfilling one)!  Very happy to know there is a hospital and staff with the know how to give people hope in dire situations!

  • Jennifer Tomasino

    Sweet boy!  You are a rock star and you’re in our thoughts and prayers.  Get better soon and get out of there!  CHB and Wayne-O are our heroes too.  

  • Alyssa Zaugg

    such a strong little man!!! My husband and I actually saw you guys there with him! Natalie (our daughter) had her second open heart surgery on May 18th and we were there for 2 weeks afterward! It’s so refreshing to see pictures of him so smiley and happy; what an amazing little boy you have!!! And he’s lucky to have such wonderful parents. Good luck to you all, prayers are being sent your way!!

    Xoxo,
    Alyssa Zaugg

  • Julie Blasbalg

    I think about all of you all the time. Stay strong little guy! Not only do you have a wonderful team of doctors, but you are blessed with truly amazing parents.

  • Guest

    What a great story!

  • Jessica Bearak

    Can an 18 week old be your hero?  If so, Ari (and his parents) are mine.  Thinking of you all and feeling very thankful that we have places like Boston Children’s Hospital in this world.

  • Corinne

    Love this interview! I got to meet Ari’s grammie in CICU back in May. Continuing to offer up prayers for the whole family!

  • Gmichaud0108

    My son had 5 open heart surgeries by the time he was 4. The first one was less then 24 hrs old would have been sooner but they thought he had another big problem in another part of his body so gave him meds to prolong it. I got rear ended when I was 8.5 mths pregnant so they sent us for tests in N.H. but the equipment was only so good so sent us to Boston needless to say had had 3 defects and said I would have to deliver in Boston. On our side he was 9.3 oz. and 23.5 inches long  he soon dropped to 6 lbs.and he was getting flooded to the lungs right away so had to have banding done. He had Tricuspid Artresia, Transposition of the Great Arteries and Septral Ventral Defect.They said if he was born 6 years earlier they couldn’t have saved his life. Needless to say Boston Children’s Hospital was our second home for many many years which we are thankful for. He had a pacemaker put in in 9th grade because his exercise and resting heart rate were both low. We don’t know what his future will be but am happy to say right now is doing pretty good, He just graduated college at the top of his class and is giving back to help other kids. He is now 6 ft. 4 inches so takes up 2 bed spaces at Children’s. I just want to say I am proud of him, he is a fighter and we are so Thankful for Boston Children’s Hospital and all the staff who worked there. We have made so many friends over the years there also.. And please sign up for all the tests and studies they offer to you all. As we have to help them study how different surgeries etc. have helped our kids thus far. And if they can pioneer it differently to make it better from the studies  or restructure all the better for them and the kids of our future…….Thank You Children’s Hopital from the bottom of our Hearts   The Michaud family and good luck with Ari I am sure he will do great in their hands …….. Love to all Godbless…………

  • Lisa

    Ari and family,  I will be thinking about you and wish you the very best.  One day at a time, and with that beautiful smile you will be fine.  LOTS of Love….I have had my heart valve repaired.  A friend in Mass.

  • Tonidelllow1

    They sure have come a long way in heart surgery.  When My daugter was born in ’81 she had atrial and ventricular septal defects which they treated with medicine so she could reach 20 pounds and they could do surgery to correct them.  My prayers are with you in your journey.  Keep the faith of God and humor.  It will see you through.

  • Laura Decamp

    This brought such happy tears to my eyes. My son has had 5 heart surgeries, 3 OH & he just turned 19mos the other day. He has been diagnosed w a bunch of other health issues and set backs that make me sad for him, but I’m so glad he is here. Reading this blog made me laugh and sympathize with the parents and idolize them for their brave front at such a trying time in life. Next time I get down about the lemonade stand he’s been handed I am going to read this blog and really appreciate all he does have. Thoughts and prayers to Ari and his family and a million thanks to the amazing staff of 8 east/south and the cardiologist at chb!

  • AliciaMpaul

    Thank you Boson Children’s Hospital! Ari we are thinking of you and sendin healing thoughts your way.

  • Benjamin Bryan

    Love you Ari, Love you Childrens Hospital Team!!!

  • Vmahoney11

     When my grandson was born he was diaganosed with Hyperplastic left heart syndrome. he was treated at Children’s under the care of Dr. John Tridman.  After many many open heart surgeries he is now in collage and just turned 22 years old.   My prayers are with you.

  • Grammie

    Ari, I am so proud of you, your words ring true and touch so many people.  The “daring” life you lead is without precedent, the paths that you have taken have given all of us Pause as to what really really matters in this life……..You my dear Grandson, are the world to me and you are touching thousands with that incredible beguiling smile……xxxx

  • Eugene Albernaz

    Amazing. Truly amazing.

  • Emele29

    Congrats Ari, your story has touched my husbands and my life. We had a baby girl that that was born with both a asd, and vsd disorder with a common valve. After the most stressful 6 months of pregnancy We found out b/c of fetal sonograms, and then 8 months of waiting till her doctor said it was time for her open heart surgery. Fortunately she is now a thriving 15 month old and doing GREAT we wish you and your family the best of luck! You are one strong little boy! We are from NY and had the surgery done at Columbia Pres. From a former Bostonian surgeon Emile Bacha 

  • Ari’s story and all the others are very inspiring.  I wish you all the best.  My thoughts and prayers are with you.

  • Tammydawn102

    my prayers are with you Ari, and your parents.  your story just brought tears to my eyes . my son goes to arkansas children’s hospital in little rock ,ar  my little man was diagnosed with mitral atresia double outlet right ventricle severe transverse arch hypolplasia (hypoplastic left heart) 13years ago …….my thoughts and prayers be with you Ari and your family

  • Clperki63

    Boston, a city with some of the the best Drs. in the world and full of Irish Blessings. Sending a irish blessing to sweet Ari and his beautifil smile and to you & your entire family.  GOD BLESS!

  • Carolyn Smaka

    Thanks for sharing your story and all the best to you and your beautiful son.  

  • Jeanne Cronin

    Beautiful Boy!!!!  That’s Ari the Rockstar…getting more famous by the minute….the “rents” may need to hire a bodyguard….love you Ari!!!! 

  • Alisonmcgough

    What a beautiful Heart Warrior he is & Praise the Lord for him<3

  • Pcular92

    Baby ari! You are in safe hands. God will listen to all your prayers and let you live a sweet, healthy, and successful life! You are an inspiration to us all by facing life’s challenges head on! Don’t give up! My prayers are sent to you and you’re unforgetful strong parents and family that also face this challenge!

  • Yetty

    thisis simply amazing!!!!! Happy for you Ari!! Good job to the doctors at Childrens AFCC

  • Serei6

    Ari, a special gift from God. You are a superstar and your parents are the best of the best.  The doctors and nurses who constantly watch over and care for you are your guardian angels. Keep up the wonderful work and we all look forward to a happy outcome for you !

  • Bauerbuys

    We will be praying for you Ari and for your parents.  We are proud parents of a 19 year old son who under went open heart surgery at 5 months old.  It is a tough road but in the end it is well worth it.  You will grow up to be a strong, loving son.

  • Marie-Frances

    Ari, YOU ROCK!!  Erica and Mike – you are AMAZING parents!!!!  You are in my thoughts and prayers!

  • Isabelle

    sharing your story is just amazing and keeping a clear head as a parent is so tough!  you are amazing parents with an amazing baby and an amazing team of doctors! all the best and keep up the strength. your baby is beautiful and has a gorgeous happy face.. 

  • Shabaz

    And  ME In 1958   =XD

  • Susan

    Ari, you are the best! No doubt you will find better digs but until then enjoy your stay at Children’s. There is no doubt that you are surrounded by the best Docs and nurses and it sounds like you’ve got yourself some pretty cool parents. Prayers, good karma and hugs to you pal, and keep smiling that beautiful smile. The world is your oyster.

  • Rachel

    Ari, your sweet smile reminds me so much of my son’s and given that you both had similar prenatal diagnoses; I guess you have a lot in common! I so appreciate your family’s outlook and look forward to every update and picture of you. We are pulling for you… we are here for you… we are amazed by you…

  • Cynthia M

    Mike, Erica & Ari.  We saw Stan & Nancy this weekend in ND.  Needless to say, many of the conversations were about you little Ari.  We are thinking of you, praying for you and can’t wait to see pictures of you well!

  • Nicole Gallant

    Ari, you are a fighter and you give me so much hope and you put a smile on my face….thank you and keep up the good work!

  • Nicole Gallant

    Ari, you are amazing, and such a fighter!!! I love your humor….you give me hope and you made me smile!!! P.S…..you’re really cute and I think my lil Kendall and you would hit it off!

  • My son had 5 open heart surgeries by the time he was 4. The first one was less then 24 hrs old would have been sooner but they thought he had another big problem in another part of his body so gave him meds to prolong it. I got rear ended when I was 8.5 mths pregnant so they sent us for tests in N.H. but the equipment was only so good so sent us to Boston needless to say had had 3 defects and said I would have to deliver in Boston. On our side he was 9.3 oz. and 23.5 inches long he soon dropped to 6 lbs.and he was getting flooded to the lungs right away so had to have banding done. He had Tricuspid Artresia, Transposition of the Great Arteries and Septral Ventral Defect.They said if he was born 6 years earlier they couldn’t have saved his life. Needless to say Boston Children’s Hospital was our second home for many many years which we are thankful for. He had a pacemaker put in in 9th grade because his exercise and resting heart rate were both low. We don’t know what his future will be but am happy to say right now is doing pretty good, He just graduated college at the top of his class and is giving back to help other kids. He is now 6 ft. 4 inches so takes up 2 bed spaces at Children’s. I just want to say I am proud of him, he is a fighter and we are so Thankful for Boston Children’s Hospital and all the staff who worked there. We have made so many friends over the years there also.. And please sign up for all the tests and studies they offer to you all. As we have to help them study how different surgeries etc. have helped our kids thus far. And if they can pioneer it differently to make it better from the studies or restructure all the better for them and the kids of our future…….Thank You Children’s Hopital from the bottom of our Hearts The Michaud family and good luck with Ari I am sure he will do great in their hands …….. Love to all Godbless…………5 •Reply•Share ›
    This brought such happy tears to my eyes. My son has had 5 heart surgeries, 3 OH & he just turned 19mos the other day. He has been diagnosed w a bunch of other health issues and set backs that make me sad for him, but I’m so glad he is here. Reading this blog made me laugh and sympathize with the parents and idolize them for their brave front at such a trying time in life. Next time I get down about the lemonade stand he’s been handed I am going to read this blog and really appreciate all he does have. Thoughts and prayers to Ari and his family and a million thanks to the amazing staff of 8 east/south and the cardiologist at chb!4 •Reply•Share ›
    −Auntie Sandi calls you her “Super Hero” and you are by far all that and more. Love you to pieces, “you handsome devil you”!
    y son had 5 open heart surgeries by the time he was 4. The first one was less then 24 hrs old would have been sooner but they thought he had another big problem in another part of his body so gave him meds to prolong it. I got rear ended when I was 8.5 mths pregnant so they sent us for tests in N.H. but the equipment was only so good so sent us to Boston needless to say had had 3 defects and said I would have to deliver in Boston. On our side he was 9.3 oz. and 23.5 inches long he soon dropped to 6 lbs.and he was getting flooded to the lungs right away so had to have banding done. He had Tricuspid Artresia, Transposition of the Great Arteries and Septral Ventral Defect.They said if he was born 6 years earlier they couldn’t have saved his life. Needless to say Boston Children’s Hospital was our second home for many many years which we are thankful for. He had a pacemaker put in in 9th grade because his exercise and resting heart rate were both low. We don’t know what his future will be but am happy to say right now is doing pretty good, He just graduated college at the top of his class and is giving back to help other kids. He is now 6 ft. 4 inches so takes up 2 bed spaces at Children’s. I just want to say I am proud of him, he is a fighter and we are so Thankful for Boston Children’s Hospital and all the staff who worked there. We have made so many friends over the years there also.. And please sign up for all the tests and studies they offer to you all. As we have to help them study how different surgeries etc. have helped our kids thus far. And if they can pioneer it differently to make it better from the studies or restructure all the better for them and the kids of our future…….Thank You Children’s Hopital from the bottom of our Hearts The Michaud family and good luck with Ari I am sure he will do great in their hands …….. Love to all Godbless…………

    This brought such happy tears to my eyes. My son has had 5 heart surgeries, 3 OH & he just turned 19mos the other day. He has been diagnosed w a bunch of other health issues and set backs that make me sad for him, but I’m so glad he is here. Reading this blog made me laugh and sympathize with the parents and idolize them for their brave front at such a trying time in life. Next time I get down about the lemonade stand he’s been handed I am going to read this blog and really appreciate all he does have. Thoughts and prayers to Ari and his family and a million thanks to the amazing staff of 8 east/south and the cardiologist at chb!

    −Auntie Sandi calls you her “Super Hero” and you are by far all that and more. Love you to pieces, “you handsome devil you”!