Dear sweet supporters of my girl,
I’ve had a lot of questions about what kind of surgery our girl actually had, or what her diagnosis is, so I thought I would share. You can see some of my previous posts about her heart here, here, and here.
The procedure she actually had was a complete repair of Ebstein’s anomaly, by modified Cone technique with total valve repair, right reduction atrialplasty and subtotal closure of her atrial septal defect. In plain language that means they created a valve she didn’t have before using her own tissue, partially closed the hole in her heart and surgically reduced the size of her heart. You can see the size difference in her X-ray images pretty clearly.
Her echo’s look completely different now too. This doesn’t mean her heart is fixed, her heart will never be “normal”. And she might require further surgeries. Right now she has a lot of healing left to do, her right ventricle is performing relatively poorly, as it’s never really had to function before. It will likely take a few months to heal and remottle before we really see the full impact her surgery has had.
Here’s some info on the Cone Procedure from Mayo Clinic:
- This video shows a quick animated overview.
- This one is a video of an actual cone surgery, so skip it if you’re squeamish.
- PBS aired a documentary last fall about the Mayo Clinic that was pretty cool. If you can find it on some day, definitely watch it. There’s a section about a young woman with Ebstein’s anomaly as well, and scenes from the operating room with our surgeon.
I’ve posted most of my updates on Instagram, but in case you’ve missed it, she’s doing really well. She’s making tons of progress everyday, and likely graduating to the step down unit tomorrow.