Dylan's Heart

Exactly one year ago, at 8:30 in the morning, we handed our 4 month old baby over to his cardiovascular surgical team. Dylan was about to undergo open heart surgery.


What was meant to be a complete AV canal repair, wound up being quite a bit more complicated than everyone had anticipated. Once the surgery had begun, an additional, and extremely rare defect called an A.P Window was discovered. And thus it began. The journey of how our broken hearts were repaired.

Here is an update I wrote the day after his surgery:

Dylan's surgery began at about 8:30a.m yesterday. At around 11a.m, the Physician's Assistant came to update us as to how the surgery was progressing. She told us that the surgery was going to be a bit more complicated than they had anticipated. They had found an additional defect called an A.P Window which they did not know about until the surgery had begun. We later found out that they had never before seen an A.P window with an AV canal defect before. Never ever. Ever.


We were updated again at around 2pm and were told that the A.P Window had been closed and they were now going to begin the AV canal defect repair. She told us that because Dylan had been on the heart/lung bypass machine for so long, as well as having to be put on cardiac arrest, they were concerned that his recovery was going to be quite difficult. We were told that he was going to be sick for longer than they had originally anticipated.

At around 3:45pm we were told that the AV canal had been repaired and that he was now off the heart/lung bypass machine. She said that there was still a bit that needed to be done before we would be able to see him.


The surgeon, a genius to be sure, but yet a man of few words, came out to talk to us a couple of hours later and told us that Dylan was doing "Ok" but that his lungs were "not good".


We sat with that information for a couple more hours until the cardiologist came to talk to us. She was much more optimistic. She was exactly what we needed. We were then able to see Dylan. It was amazing...he is amazing.

I went on to write this:

My head definitely hurts, but I am telling you, my heart is so full of love for this kid. He has absolutely, positively, 100% blown me away. He is so courageous and so strong. As I was leaving today, the Physician's Assistant said, "Don't worry about Dylan. He's leading the way and I'm pretty sure he knows exactly what he's doing".

Yes, that was it. That was when my thinking began to change. When my feelings began to change. That was when my fears about Down syndrome began to fade, and my love for Dylan began to evolve into something far stronger than what I had thought possible.

My son was fighting for his life. His life that was worth living. And I was realizing that there was nothing more that I could possibly hope for, than to be a part of it. Nothing else mattered.

Dylan began to recover. His heart began to heal. And all the while, my heart was recovering and healing as well. As it turns out, mine was also in need of repair. See, after hearing my baby's diagnosis of Down syndrome, my heart broke. Not completely in two, but indeed, it was hurt. And just as Dylan's heart wasn't working properly, wasn't working to it's fullest potential, neither was mine. It needed perspective. I needed perspective.

His heart and mine. Healing together.

It has been one year since the surgery. Dylan's heart is still not perfect. If you were to look closely enough on an echocardiogram, you would see that there is still a very small hole and a mildly leaky valve. If you were to listen carefully to his heart with a stethoscope, you may hear a murmur. In Dylan's daily life, however, these issues are virtually unnoticeable. And over time, his heart is expected to heal completely. And mine? My once damaged heart? I think if you were to look very closely, or if you were to listen hard enough, you may notice that mine is also not perfect. I'd guess that a few small cracks still remain, however most days you would never know it. And I am confident that, as time goes on, like Dylan's, my heart will also make a full recovery.

For now, our major repairs are done and we are lucky. I have been given the gift of perspective and Dylan - the gift of life. And because of this, we have both found love.

Happy Heart Day, Dylan. And thank you. We are incredibly proud of you.