First and foremost, I want you to know that everything will be alright. I truly mean that.
I understand that right now, it’s hard for you to accept this—your heart feels like it’s been shattered into countless fragments. You are in disbelief, and fear is consuming you. All you want is for your little one to be safe.
I can relate; I was there a few years ago. One morning, I awoke with the excitement of a child on Christmas Day. My partner and I were headed to our anatomy scan, eager to learn our baby’s gender. Everything seemed perfect. I was feeling great—no morning sickness—until those fateful words shattered my world: “I think there’s a problem with your baby’s heart.”
In that moment, I knew it wasn’t good. I wept uncontrollably. How could something like this happen to us? I felt as if I were trapped in a nightmare, quickly spiraling into deep sadness. The joy I had been feeling vanished instantly.
The diagnosis was serious: hypoplastic left heart syndrome (HLHS). Our precious little boy would be born without the left side of his heart.
Our baby boy. We were expecting a beautiful baby boy.
The researcher in me spent endless hours online. HLHS is one of the most severe congenital heart defects a baby can have. With that knowledge came a wave of self-blame, which I urge you not to do. You did nothing wrong. As you may have already realized, there’s a lot of bargaining that happens with such a devastating diagnosis. You hope that maybe the doctors made a mistake. We certainly did. We visited one of the best pediatric hospitals in our city, only to have them confirm the diagnosis.
One thing became clear to me: I was stronger than I had ever known, and no one could take that away from me.
In situations like this, people will offer unsolicited advice, often with strong opinions. You may hear, “You should terminate,” or “Please don’t terminate.” Just smile politely and remind them that this is your choice—your baby, your decision. And yes, you are indeed strong.
It’s a painful journey, filled with immense sadness and guilt. You might find yourself asking, “What did I do to deserve this?” or “What did my baby do to deserve this?”
After much thought and research, my partner and I decided to continue with the pregnancy. It was a deeply personal choice. You may choose differently, and that’s okay too. Always remember, whether facing a congenital defect or any serious diagnosis, you must do what feels right for you and your baby. Don’t let anyone take that away from you.
I have my regrets about how I navigated the rest of my pregnancy. I spent too much time in despair, allowing the diagnosis to overshadow my daily life, even leaving my job. It felt as if I didn’t deserve to enjoy my pregnancy after that news, but I was mistaken. Luckily, I met some incredible women who had been through similar experiences. One of them told me to stop punishing myself; I needed to take care of myself.
Walking into my baby shower was bittersweet. I was thrilled to be having a baby, yet heartbroken knowing he would be born with serious health challenges. When I returned home to put away the gifts, I shed some tears, wondering if my son would ever wear the adorable outfits. It’s completely normal to have those thoughts. We are, after all, human.
This kind of pregnancy, regardless of the outcome, will leave a lasting impression on you. However, amidst the struggles, I discovered strength and moments of joy. I learned that women are resilient. I made it through, and so will you.
Lean on those who support you. Research your options. Remember, you are not alone. Stay hopeful, even when it feels difficult (and trust me, I know how hard that can be).
Since my journey with Liam, I’ve welcomed two more children. Yes, I worry about them constantly, but I recognize that comes with the territory.
While I can’t change the past, I am thankful. Thankful to be a mom, thankful for my strength, and thankful for the support of those around me. You have that support too.
I’m here with you on this journey. You will get through this. I promise.
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