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.
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Update
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.
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.