Update Feb 24, 2017
Our son Ari Schultz was diagnosed at his 18 week ultrasound with critical aortic stenosis and evolving hypoplastic left heart syndrome. This meant if we didn’t intervene before he was born he would have only a 2 chamber heart. We did, indeed, intervene, first at 20 weeks of gestation, setting us on a wild and unexpected path.
For the last 5 years Ari lived an eventful life both inside and outside the hospital. Life-wise, he’s a rabid sports fan and loves being on the Assumption College Baseball team (see video above), is mesmerized discovering the world Harry Potter, adores his sister Lexi and brother Eli, and is an all around good kid.
Medically, as of this writing, he’s been living inpatient at Boston Children’s Hospital for the last 76 days suffering from congestive heart failure, waiting status 1a for a heart transplant. In all, we’ve been waiting 192 days for a new heart. We don’t know how long it will take for a heart to come or how he will fare, but we have high hopes. The wild and unexpected path continues.
As for medical background, Ari:
- Was the first person ever to undergo two successful heart surgeries before he was born
- Has had 3 of his 4 heart valves replaced in three major open heart surgeries
- Has had scare tissue cut out of his left ventricle wall in two of those open heart surgeries
- Is only the 5th person in the world to receive the experimental Melody valve in his mitral position
- Has had plus or minus 20 surgeries in all, including open heart, in-utero surgery, cardiac catheterizations, central lines, G tubes, and more
- He is 100% sensitized to antibodies, which means fighting off rejection when he gets a new heart will be an extremely difficult path with uncertain outcomes
Next up (we hope), is one more very big open heart surgery — his biggest ever — where we hit the reset button and see where the journey takes us from there.
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Update 2012
It’s been about 6 months since we posted this “about” page in the days after receiving the diagnosis. If you’re here for the first time, here are a few posts that can catch you up in a jif:
- Flutie to Phelan – It Begins: First post
- The Beautiful Balloon and Plus One: After first fetal intervention
- Action Stations – Part Deux: Danger becomes first baby to have second fetal intervention
- Whaddup Peoples!: Danger changes name to Ari, joins us in the world
- Captivity, Day 15 and Birth of Hulkamania: Ari’s journey at the hospital
- Action Stations Part IV and Action Stations Part V: Ari comes home, goes back, comes home, and prepares to go back
And, of course, whatever the most recent post says. May there be fewer calls Action Stations.
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On September 28, 2011 Erica and I went to get an ultrasound to find out if our baby on the way was a boy or a girl. It’s a boy (yay!), and he has a special heart. He was diagnosed with fetal critical aortic stenosis. Now we start a journey to see if we can’t do something about it.
Hang on Schultz…the cavalry’s on the way!
Why Echo of Hope? An ultrasound sends sound waves into the body. When the sounds echo back, they make cool-but-grainy pictures on these groovy machines. Assuming all is okay, at 18 weeks most people are just looking for the presence/absence of a wanker. The 18 week echos brought us the worst news of our lives. At the same time, it was a smoke signal from the kid:
“Hey, widen up my aortic valve. And get crackin’.”
Echos confirmed that the left ventricle and the rest of the heart made Schultz a “perfect candidate” for attempting repairs. (Note, perfect means still rolling the dice on an eventual healthy heart, but perfect enough to get started. Like everyone, our kid is perfect…)
The aortic valve repair surgery is done in utero. Since they can’t dive in there with goggles, scalpels, and balloons, they have to navigate by echo. They put a needle through Erica, through the placenta, into the baby, into his heart, and then thread the needle through the aortic valve.
Which, by the way, is mostly closed and the size of a pinhead to start. And, of course, the baby isn’t strapped to a table. He’s floating in water. Float a hard boiled egg in water and try to stick a needle into it and see how easy it is. That’s what Dr. Wilkens-Haug will do shortly. Love that woman…
Then they pull the needle, insert a balloon, and blow.
All the way guided by shadows made of bouncing sounds. Echoes of hope.
Echo of Hope 
[…] then there was Ari. The courageous, witty, brave, spunky, vivacious warrior I never met who put a smile on my face […]
I just found your blog looking to connect with other blogs. I am a mom of a heart warrior with Tetralogy Of Fallot and I wish I could have started following your journey sooner as I am new to blogging. I am part of heart mom groups and I hope we have crossed paths somewhere in one of those. I am heartbroken to read the latest blog post and my prayers and heart goes out to you both mom and dad. Prayers sent for comfort and strength.
[…] then there was Ari. The courageous, witty, brave, spunky, vivacious warrior I never met who put a smile on my face […]
[…] was diagnosed with heart disease before he was even born, according to the family’s blog. At the time of his transplant Ari had been in the hospital for four months due to congestive heart […]
[…] left heart syndrome, a complex and rare congenital heart defect, his parents said in a blog post. If they hadn’t intervened before he was born, they said, he would only have two out of his […]
[…] Ari Schultz was diagnosed with critical aortic stenosis before he was even born, according to Echo of Hope, the website set up in his honor. His parents, Mike and Erica, agreed to let doctors intervene when […]
[…] Ari, the oldest of Mike and Erica Schultz’s three children and big brother to Lexi, 3, and Eli, 10 months, was diagnosed with a serious heart condition before he was born, at Erica’s 18-week ultrasound. Without medical intervention that began at 20 weeks gestation, he would have been born with a heart with only two chambers. According to his parents, Ari was the first person to ever undergo two heart surgeries before birth. […]
[…] According to Echo of Hope, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome while his… […]
[…] According to Echo of Hope, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome while his mother was pregnant with him. He went through two heart surgeries before he was even born. A couple weeks after his heart transplant in March, the 5-year-old went into cardiac arrest, but has recovered. […]
[…] According to Echo of Hope, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome while his mother was pregnant with him. He went through two heart surgeries before he was even born. A couple weeks after his heart transplant in March, the 5-year-old went into cardiac arrest, but has recovered. […]
[…] According to Echo of Hope, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome while his mother was pregnant with him. He went through two heart surgeries before he was even born. A couple weeks after his heart transplant in March, the 5-year-old went into cardiac arrest, but has recovered. […]
[…] According to Echo of Hope, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome while his mother was pregnant with him. He went through two heart surgeries before he was even born. A couple weeks after his heart transplant in March, the 5-year-old went into cardiac arrest, but has recovered. […]
[…] to the “Echo of Hope” blog where Ari’s parents write about his journey, the little boy was diagnosed with critical aortic […]
[…] According to Echo of Hope, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome while his mother was pregnant with him. He went through two heart surgeries before he was even born. A couple weeks after his heart transplant in March, the 5-year-old went into cardiac arrest, but has recovered. […]
[…] According to Echo of Hope, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome while his mother was pregnant with him. He went through two heart surgeries before he was even born. A couple weeks after his heart transplant in March, the 5-year-old went into cardiac arrest, but has recovered. […]
[…] According to Echo of Hope, Ari was diagnosed with critical aortic stenosis and evolving hypoplastic left heart syndrome while his mother was pregnant with him. He went through two heart surgeries before he was even born. A couple weeks after his heart transplant in March, the 5-year-old went into cardiac arrest, but has recovered. […]
[…] to information on a website – Echo of Hope – created for him, […]
[…] to information on a website – Echo of Hope – created for him, […]
[…] to information on a website – Echo of Hope – created for him, […]
[…] to information on a website – Echo of Hope – created for him, […]
[…] to information on a website – Echo of Hope – created for him, […]
Prayers
hi Erika and Ari and Mike! its Anna O’Donnell, i have to write a paper for language arts on a topic of my choice. i was wondering if i could do it on Ari and his heart story? i would need his story and maybe SOME of the surgery info. hearing his story at the ball inspired me to share it with people. i couldn’t think of a way to do it until today when she assigned the paper. if you dont want me to i totally understand!! if you could email my mom with the answer that would be great!!! her email is rie1313@aol.com. i hope Ari recovers fast!! sending the guardian angels that watched over me, your way. :* all my love, Anna
[…] up in May as the valve isn’t quite right. You can read up about his crazy journey here: Echo of Hope. He’s a little buddy of mine I like to watch grow up. He’s my internet nephew and a […]
Chills. Happy tears. And a whole new feeling of HOPE! Mike & Erica, this blog is incredible. I’m so happy there is a place where all your friends & family can remind you every day how much the THREE of you are loved & supported through this journey. Mike your words touch my heart, as I’m sure they do for many others. Your attitude, perspective and determination shine through & it’s obvious to anyone who knows you or Erica…you are already fabulous parents =) I think of you three everyday and say many prayers & send love your way.