05/06/2025
When Ethyn was two weeks old and still in the hospital, the hospital performed an echocardiogram as protocol to make sure his heart was ok. We had a tech come in, do the exam, and then we didn’t hear anything back, so we assumed all was ok. After we had been home a month or two, I was going through Ethyn’s charts, and came across his echo test, and found they had written something about a valve that should have closed at birth, but it was still open at 2 weeks old. I noted this with his team, and we made an appointment for a year later because sometimes it can take up to 6 months before the valve closes, but it’s not common.
Fast forward to now, and we had his follow up echocardiogram. I went in assuming everything had closed up and we would be fine and dandy to go. The tech hooked up her machine and immediately said he had a good heart! I felt the procedure would go well, and we would be good to go.
Towards the end of the procedure, the atmosphere shifted. At first the tech was bubbly, cooing at Ethyn, singing, being silly, etc. She said she only had one more thing to do, and we would be done, and that’s when the shift happened. No more singing. No more cooing.
She said she would be right back, and needed to talk to the doctor. He came in with her soon after and actually performed the last part of the ultrasound himself, which was odd. Both of them were somewhat quiet as he moved the wand around, showing her some things on the screen. Then we were done, and instructed to go back to our room.
When we got back, the doctor listened to Ethyn’s heart a lot. Over and over he would position his stethoscope on his chest and his back, readjusting as needed. I felt like I couldn’t breathe… I knew it wasn’t all fine and dandy like I initially thought.
His heart is fine for the moment, but the valve didn’t close like we had thought. It’s small, but still open, and could potentially cause enlargement of the left side of his heart. He also has a murmur, which is new information to us, and the doctor feels somewhat confident that the murmur is not connected with the open valve, which is why he kept listening to Ethyn’s heart. But he wasn’t certain it wasn’t related either, so we check back in 6 months. Now to add another team to Ethyn’s list.
They will be checking every so often to make sure his heart stays ok, but if anything changes, Ethyn will have to have a plug put in his heart where the open valve is. Fortunately the valve is small, so the doctor said they would be able to use a catheter to put the plug in, and we would not need open heart surgery.
Just when we feel like we’ve got a groove and we feel our new normal, something comes out of left field and throws us off balance. I’m grateful things are stable for now, and thankful we don’t need surgery currently. Hopefully we will never need a surgery. So as I’ve said since the beginning of this journey, we will take it one day at a time.
