First, let me assure you that you will find your way through this. I truly promise you that.
I understand you may struggle to accept these words right now. Your heart feels shattered, and the weight of shock and fear is overwhelming. All you want is for your baby to be safe and healthy.
Eight years ago, I found myself in a similar situation. On the morning of April 29, 2008, I woke up filled with anticipation, much like a child on Christmas morning. My husband and I were on our way to the anatomy scan, eager to discover our baby’s gender. Everything seemed perfect; I was feeling great, free of morning sickness. But then came the words that would forever haunt my thoughts: “I think I found a problem with your baby’s heart.”
In that moment, I knew something was wrong. I sobbed uncontrollably, struggling to comprehend how this could happen to us. It felt surreal, as if it were a nightmare from which I couldn’t awaken. Almost instantly, I descended into a deep depression; all joy and excitement drained away.
The diagnosis was serious—it was hypoplastic left heart syndrome (HLHS). Our precious boy would be born missing the left side of his heart.
Our baby boy. A beautiful baby boy. I spent countless hours researching HLHS online, learning that it’s one of the most severe congenital heart defects. With that knowledge came an overwhelming sense of guilt. But please, I urge you not to do the same. You have done nothing wrong.
You may find yourself bargaining with fate, hoping for a mistake from the doctors. We did too. Unfortunately, the esteemed pediatric hospital confirmed our worst fears.
One realization struck me early on: I was stronger than I ever thought possible. No one could take that away from me.
During such a trying time, you will encounter many opinions. People will feel compelled to share their views on what you should do. “You should terminate,” some will say. “Please don’t terminate,” others will counter. Smile gently and firmly remind them that this is your decision. This is your baby, and you are the one who knows what is best for both of you. Remember, you are strong.
The pain is immense. The guilt is crushing. You might find yourself asking, “What did I do to deserve this?” or “What did my baby do to deserve this?”
After much reflection and research, my husband and I decided to continue with the pregnancy. This was a deeply personal choice, and you may choose differently. Remember, whether facing a congenital defect or any life-threatening diagnosis, you must do what is right for you and your baby. Never let anyone take that power away from you.
I have my regrets about how I navigated the rest of my pregnancy. I allowed the diagnosis to overshadow my daily life, even leaving my job. I felt undeserving of enjoying my pregnancy, a thought that proved to be misguided. Thankfully, I met several incredible women in similar situations. Some wallowed in guilt like I did, but one in particular urged me to stop punishing myself. She reminded me that this was the time for self-care.
Walking into my baby shower was bittersweet. I felt joy at the thought of welcoming our son, yet sorrow knowing he would be born with significant health challenges. When I returned home to unpack the gifts, tears filled my eyes as I wondered if Liam would ever fit into any of the clothes. Those feelings are natural and acceptable; after all, we are human.
This type of pregnancy leaves a lasting impact, no matter the outcome. Yet, I discovered strength and moments of happiness along the way. I also learned that women are incredibly resilient.
Lean on your support system. Conduct your own research. Know that you are not alone. Try to stay positive, even when it feels impossible.
Since Liam, I have had two more children. Worrying about them is part of motherhood, and I have come to accept that.
While I cannot change the past, I am filled with gratitude. I am thankful to be a mother, thankful for my strength, and grateful for the support around me. You have that support too.
I stand with you on this journey. You will emerge from this, and I promise that.
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Summary
To the mom-to-be dealing with a devastating diagnosis, know that you are not alone. It is natural to feel lost and heartbroken in such a situation. Remember that you are strong and capable of making decisions that are right for you and your baby. Lean on your support system, seek information, and try to find moments of joy amid the challenges. Your journey may be difficult, but you will get through this.