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.
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.
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.