Ari’s story as told by his Dad, Ari himself :), and what I found on his blog:
On Wednesday, September 28, 2011 Erica and I went in to Mass General Hospital for our 18 week ultrasound. We we’re excited to find out if we are having a boy or a girl. It’s a boy, and he has a special heart.
In this case, special = big challenge. A Critical Aortic Stenosis was detected at ultrasound, confirmed at echocardiography the next day by two pediatric cardiologists at MGH, and re-confirmed Monday October 3 at the Advanced Fetal Care Center at Children’s Hospital in Boston by the world’s leading pediatric cardiologist in this particular condition.
This was during Erica’s pregnancy: Frequently Asked Questions:
What do you know about baby Schultzmeister’s heart right now?
Aortic valve is mostly closed. This is bad. So the blood in the heart is flowing in all the wrong directions. Thus the left ventricle, whose purpose eventually is to pump blood throughout Schultz the Younger’s body, is working overtime to try to push blood through the valve. But it’s closed. So the left ventricle pushing harder and harder. Building up pressure. No rest. No release.
With the normal exit door closed, blood is flowing out the in door…in this case, the mitral valve. In other words, the mitral valve is leaking, and is likely also be starting to be damaged, at least a little. In this case this is good as the leakage relieves some of the pressure on the left ventricle. But it’s just temporary. Untreated, all sorts of things you don’t want to happen start to happen.
What happens if we don’t treat with surgery?
99.9% chance of Hypoplatic Left Heart Syndrome (HLHS).
HLHS is what we’re doing everything in our power to avoid. So we’re trying to head it off at the pass with the surgery.
Wayne Tworetzky, the doctor in this video (http://www.childrenshospital.org/az/Site481/mainpageS481P0.html), is our doctor, along with about 10 other world-class specialists. And there are a bunch of other folks on the care team, most of whom we’ve yet to meet. It’s a team that works together specifically on these. As Dr. Tworetzky put it, kind of like the guys in Space Cowboys, but it’s still a new, experimental surgery. I guess half of the Boston medical community is sounding the alarm for this one. Attention all Colonial units: Cylon attack underway. This is no drill.
What’s with the surgery?
We’re good candidates for the surgery because Erica is young, in good health and shape, the baby’s left ventricle is currently still Hans and Frans, and we’re early in the pregnancy: as of today, 19 weeks, 1 day. Average surgery time is 23 or 24 weeks. But the stenosis is severe, so good thing we caught it early.
To our knowledge, there have been about 140 cases of the surgery. Ever. Dr. Tworetzky and his team have done 89 of them. We’ll be number 90. (Son now has a basketball and soccer number, and a must-beat golf score.)
Been now 10 years since they started doing these surgeries. As they describe it, 10 years ago was the stone age. In the last 3 years, techniques and outcomes have improved significantly, though there’s still very little data and every case is different. No matter what, we’re rolling the dice, but we’re doing what we can to cheat at every turn and fix the game so we and the little bugger win the jackpot. Come on 7…baby needs a new pair of valves.
They had the surgery in utero and he did great..then a few months later.. Ari was born on 2/16/12. His Dad then wrote this:
Back to the big game. When little dudes like me arrive at the big show, our hearts act like they’re working, but they’re essentially on training wheels. Like a kid learning how to ride a bike, mom was holding the seat. It felt to me like I was doing it all on my own, but it turns out she was back there the whole time.
Once we come out, the anatomy of our hearts physically change. The training wheels fall off and we are left to run our own bodies with our own hearts without mom holding the seat any more. This change typically takes a day or two.
Due to the two fetal interventions, my left ventricle was pumping away when I came out. (Yay!) It doesn’t look great, though. It’s small and full of endocardial fibroelastosis, a.k.a. scar tissue. (Boo.)… to read more..please visit this cute little man’s blog:http://echoofhope.org/ and his Facebook page:https://www.facebook.com/dangerschultz
P.S. The blog is really funny.. it is written by “Ari Danger”.. AKA Dad I believe.. really cute. Ari is such a cute baby and he just turned one.. so surgery has done wonders!!
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