When you lose your child, you are always wondering what you did wrong. At least, I do.

My daughter was born with Hypoplastic Left Heart Syndrome (HLHS), which basically means that the left side of her heart didn’t work properly. Within a few days of her birth, she had surgeries on her heart to keep her stable. This is pretty standard as she was small when she was born. For HLHS patients, there are a series of surgeries that are performed over a period of years that are necessary for everything to function properly, often ending in requiring a heart transplant.

Unfortunately, we never made it to that point. So one day, we went to one of our normal doctor’s appointments. I told them that she had been crying a lot more than usual and was pretty inconsolable. The doctors did their normal checkup and based on that plus not seeing the growth that they wanted and various other factors, they decided that she should be checked into the hospital. It was such a harsh realization and it made me question everything about myself. However, I had to do what was best for her.

They monitored her closely and the situation only got worse. So they scheduled her for surgery. I was trying to balance my time between the hospital and being home with my son and it was so hard. I felt like there just wasn’t enough time in the day. I called frequently to check on her. As things worsened, they decided to schedule her for surgery as soon as possible. I didn’t want to worry but of course, I did.

On Father’s day, my family and I were out for breakfast with my dad when I called the hospital for my regular check in. Unfortunately, I didn’t get the normal neutral news. I was told that her heart had stopped overnight/early morning and it took a while for them to get it back going. I was so angry that they hadn’t called me, I was scared and worried about my child and I just started bawling right in the middle of the restaurant. My dad asked me what was wrong and I couldn’t even get it out. He took the phone from me and the doctors told him the same thing. He quickly paid for our food and we all rushed down to the hospital. I called her dad to tell him what happened. I was in shambles. We made it to the hospital and my dad and I went in to see her. She was hooked up to this heart/lung machine (I don’t remember the technical term) and she had all these tubes and things running out of her. She was not breathing on her own, she wasn’t doing anything on her own. I knew then that everything I feared from before she was born was happening.

They told us that they didn’t know if she had any brain damage yet but would be doing a brain scan. But I didn’t need them to tell me, a mother knows.

I knew when I went back home.

I knew when they call me.

I knew when they asked me to come down to the hospital and to not come alone.

I knew when they sat me and my family in a conference room with three of my daughter’s doctors.

I knew when they debriefed me on everything that happened and I heard hardly any of it.

I knew before they told me that she was basically gone due to the lack of oxygen when her heart stopped.

I knew.

My daughter would have been 7 years old this month. I thought grief lessened over time but writing this brought up so much pain. I stopped to cry then I wrote through tears. But here I am, I made to the end of this post. I’m emotionally drained, I truly am.

Stay well *