“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.
Alicia McPeters, President
Hello there! My name is Alicia McPeters, and I am the President and one of the Founders of The Heart Hero Project. The little boy on this page is mine. His name is Liam, and he was born in November with HLHS. Starting this charity was something I have wanted to do since the day he was born. When we found out about his condition, noone I knew had ever even heard of it. Trying to find information on the internet was absolutely terrifying, filled with outdated statistics and dry medical studies. The overall lack of information available was disheartening. I know how far the medical field has come to increase the survival rate of these babies, and I know there is so much being done today. I can’t wait to see what the future brings. With this organization, I hope to increase awareness of HLHS, so it will get some front page attention, and hopefully in return, obtain more opportunities for hospitals and doctors get the funding they need to progress in their research to find a cause and a cure. I want to provide the support that will allow these families to get through the hard times, and for these children to have full and meaningful lives. I also want The Heart Hero Project to be somewhat of a support system for families, so that no one feels alone, or that there isn’t anyone who can relate to how they feel. I have big dreams for this organization, and I hope that everyone involved now and moving forward will become just as passionate as I am in helping and giving back. Thank you all in advance for any and all support!
Alyssa Rosenlicht, Secretary
Hi! My name is Alyssa Rosenlicht and I’m the secretary here at the HHP. Co-founder Alicia and I have been best friends since high school. We grew up together, got married together, even live on the same street. We’re sisters by choice and best friends for life. So, when she called me on June 30th, 2017 to tell me the news about Liam, I pretty much resigned myself to the notion that her fight was my fight and I was as much dedicated to Liam’s health and happiness as she was.
I’m a doer - I am a fixer. I couldn’t figure out how to fix Liam’s heart, so I decided my role was to figure out how to support Alicia in the most beneficial ways possible. But the information available was limiting. What do HLHS families need, what special products will Liam need? How can help make the transition to home easier? What makes heart babies different than other babies and what should I be planning for?
The entire research process made me realize something invaluable. While HLH mommas are busy fighting for their baby’s life, the support system around the momma must do the same: fight for her life. I learned that the best things you can do for HLHS families are simple things: cleaning the house, doing the laundry, fresh food in the fridge and a warm meal on the table.
It’s this knowledge and experience that I bring to the group. I have a unique perspective Alicia may not have: how to support HLHS families in ways they may not always see, but will always appreciate. My role is to assist the support system around the hurting family with valuable information, tips, and a good dose of laughter in these difficult times.