An HLHS Warrior
I had twins in February 2023, and they were boy/girl twins. My son ended up passing away, so I ended up pregnant again shortly after we lost him. It was a complete surprise. I was told I would have a healthy baby boy. To my surprise, he was healthy, but he kept breathing a little funky and fast. Our family doctor referred us to a cardiologist, and we got an echocardiogram done. I was then told half of his heart did not work, his aorta was thick, and there were a few other things. It was a lot to take in at the moment.
We were told he would have to be life-flighted to our nearest children’s hospital two hours away in Indianapolis. This was on Memorial Day weekend, the same weekend I had lost his brother. There was nothing anyone could do with it being the holiday weekend, so my baby boy was connected to all of these medications and a ventilator. The next day, he had to go on ECMO, and that itself is scary. The day after that, they had to remove two-thirds of his intestine, giving him an ostomy bag. That was another thing that was very worrisome.
He then got so many rare bacteria, such as Candida and yeasts. They said they hadn’t seen any of them positive in a lot of their careers. I was then told that his infection was walled off so that it would not affect the major organs, and it was the body’s way of doing things. They gave him a 10% chance and told me to give up on him. I knew that was not an option. I couldn’t control my son passing away, but with this one, I could at least have a little bit of a say in it if it were to happen. So I was automatically going to try everything.
I remember crying in a lactation room so no one could see me cry. After coming out, a doctor stopped me and asked me what was wrong, and I told him. After that, he said he would look into it. It was after that conversation that I finally had someone who not only heard me, and not only saw me and my son, but he was the only one willing to try anything. He was the only one to fight for my son.
My son was not even supposed to be alive. It is very rare to live that long, let alone without any medical intervention. He was home for 3 1/2 weeks, when most babies who have this problem are usually caught in utero and operated on within the first 24 to 48 hours of life.
My son ended up getting a hybrid surgery after ballooning his aorta and trying things that did not work, all from a surgeon who kept fighting for him. I was told that the bands probably would not work and that I should still say my goodbyes, but he went through with it, and my son went from one of the worst cases they had ever seen to his left side gaining a little glimmer of function, which they thought would never happen. He was so astonished with him, and so was the whole team on his floor.
For as sick as my son is, he is the strongest person I know. He is now fighting for his life again after his next surgery did not work very well. He’ll need his third open-heart surgery with a stay.
Thank you for listening to our long story. I’ve been told you would never know anything was wrong with Orion until you saw his G-tube, his ostomy bag, or his scar because he is so happy.
