“I just found out my unborn baby has HLHS, what do I do now?”
When I went in for my regular 20-week anatomy scan, I was thrilled. I already knew I was having a boy (thank you early blood tests!) and I brought my five-year old daughter along so she could see her baby brother for the first time. The tech started scanning and she kept going over the same spots. I thought it odd at first, but otherwise didn't think much of it. Of already had all of the blood genetic tests done, my baby was perfectly healthy. Then, she told me she'd be right back with the doctor. Now I started to think hmm, something doesn't seem right. But my daughter was five now, I couldn't remember what the ultrasound process was even like. The doctor came in, scanned again, and again and again. Finally she looked at me and started to talk about heart defects and something else that started with a T. My mind just went completely blank and all I could think was I need to hold it together because my daughter is here. She finished by recommending we get a second opinion at Children's Hospital of Philadelphia. That she would call over and someone would call me in a few days. It was Friday before 4th of July and I left that appointment feeling my entire world shatter around me. I got to the parking lot, called my mom, and completely broke down.
That was the start, the start of this Heart Mom journey.
The rest of my pregnancy consisted of doctors appointments and fetal echocardiogram appointments and research and feeling hopeful and hopeless all at the same time. I cried, I fought with my husband. I couldn't answer questions about the outcomes because there wasn't anything known. Until my baby was born, they wouldn't truly know what we were dealing with. All I knew was my baby was going to be born with half a heart, he would have at a minimum 3 open heart surgeries in various stages, and that his chance of survival was around 85%. Good odds, but scary nonetheless. We didn’t tell many people. I would cringe every time someone asked me if I was ready or excited. Little did they know I was screaming inside “no I’m not ready! I have no idea what I’m going to do!”, but they didn’t know. They didn’t know my secret. I remember telling my husband at one point, I hate that pregnancy is on the outside for everyone to see. Everyone sees the belly and just goes into “awww your pregnant” mode. Not realizing that their baby, growing inside them, has one hell of a battle ahead of them. Trying to wrap your mind about something that is so unknown is probably the hardest thing I’ve ever done.
Fast forward to today, I have a one-year old beautiful baby boy, who has had three open heart surgeries, another one (hopefully) in our future, four heart catheterizations, two sick hospital stays, internal bleeding, emergency drain, and countless cardiologist and pediatrician appointments. Yet, he smiles and laughs and is goofy as any other little baby. On the outside he is perfect in every way, you would never know looking at him what he’s been through. He's a complete hot mess on the inside. But everyday he gives me hope. As many people do when they are stressed or feeling anxious, I sought help from my family doctor to be able to deal with my mental health. I have to be able to be strong and take care of myself and both of my children. I'm not too proud to admit when I need help. I also sought out distractions, I started this charity. I started en Etsy shop making candles, jewelry, shirts and ornaments. I work full time for the Government. I am just like everyone else in this world juggling being a mom, a wife, a friend, a sister, a daughter. I just have this cloud that follows me around full of what-ifs that could break open and rain down on me at any moment. The more I keep going and focusing on everything else those what-ifs stay up there.
I want to help other moms out there on this same journey (dads too!) keep their cloud of what-ifs from raining down on them. I want to be a person that can provide the "I hear you" support that someone needs when we just want to scream because we don't understand why. I hope that I can provide hope to those about to embark on this journey. I want people to see that these kids are so strong, and so resilient, and that medicine is ever changing. There is hope, and there are ways to cope. Together, we can all do this. We can do this journey together.