Sharing is Caring...

I remember the exact second when I first heard the words - your baby has a heart defect. There is no doubt in my mind that I had the deer in the headlights look on my face. In one instant, everything had changed, and as I reflect on that moment in time, I am certain that right then I began the grieving process for my unborn child.  Those feelings lasted throughout the rest of my pregnancy, and were pitted against my feelings to fight for my baby's survival.

I see that same look on parents’ faces all too often in my line of work. My professional position centers me in high risk OB where we care for the pregnant mothers of future heart babies. Being a parent of a child with HLHS, and working where I do, does not automatically qualify me as a person to consult with. I very rarely share my personal story with the patients I meet for research studies. Like most do when working in a clinical setting, I try to maintain a separation between work and home, but every now and then I meet parents that are in such duress I am compelled to offer a glimmer of hope, and I do so very carefully. If you are a parent of a child with HLHS, and your child has been through the staged surgeries, then you understand why it is important to be guarded with your experiences. They are often too much for a future HLHS parent to bear, and outcomes are very different for each child. But our experiences have put us into a very unique position, and as a member of several heart groups where I often meet newly diagnosed parents, I hear a lot of questions from parents, many of the same questions I once had myself. So I share what I've learned.

What surprises me today is hearing from parents their story of diagnosis, and how pregnancy termination is offered as an option, as HLHS is considered a lethal anomaly. Meaning, pregnancy termination can be administered in the hospital setting as a medical termination based on lethal anomaly. Please note that I am in no way judging anyone who chooses this option - my focus is on the terminology - lethal anomaly. A diagnosis of HLHS is no longer a bleak prognosis so it is difficult for me to acknowledge that it is a lethal anomaly. It is if no course of action is taken, but through staged palliation or heart transplant, the survival rate is very good at 90-95% and 80% respectively.  

I often have heart parents in the early stages of palliation ask me questions about my older HLHS child.  This is said of many experienced heart parents. So how did we become the “experts?” By default I suppose. Who better to talk to about everyday life with a heart baby than a parent who has been through it?  And I like the idea of sharing. I like that parents feel the comfort and reassurance that there is hope. Sometimes, hope it all we have. Consider being a mentor to new heart parents through a parent matching program. Some of my favorites are: It's My Heart, Kids with Heart, Little Hearts, Mended Little Hearts, Saving Little Hearts, and Sophie's Heart, but these are just a very few as there are hundreds of parent-matching programs available worldwide, and there may even be one through your child’s very own heart hospital.

Sharing is caring...