The Moment You Realize Something Isn't Right

On the surface, our anatomy scan went pretty normal. Our 22 month old daughter bounced from interest in the tv and the picture of her little brother to needing to burn off steam in the small 10x10 ultrasound room of the prenatal clinic. Logan, my husband, cracked jokes as he kept our daughter from getting into the hazardous waste bin. The ultrasound tech concluded her scan and encouraged us to sit tight while she fetched the OB.

Ready to take our daughter to day care and start his morning at work, Logan mentioned that maybe it would be ok if he went on. I agreed- everything seemed fine- what else was the doctor going to say, except, "Everything looks great- congrats on your second child"?

But, (and in these scenarios, there is always a but) when the ultrasound tech peeked in to check on us and discovered my husband had left, she went from calm to serious instantly. "You're going to want to call him and get him to come back."

The gut wrenching sensation, which can only be described as a combination of nausea, terror, and the desire to crawl into a hole, was only helped by the robotic motions of dialing my husband's cell- over and over and over until after the 8th unsuccessful dial he finally called back.

What followed was 45 minutes of anxiety-ridden waiting until finally the OB entered the room and shared the news that our son had a heart with an abnormal shape and they had scheduled an ECHO with the fetal cardiologist for later that day. There were other abnormalities, too. Our son had missing middle pinky-finger bones on both hands and his kidneys were dilated. Did we want to do an amnio today? Did we want to discuss terminating the pregnancy? We would only have until the 20th week to decide.

It would be hours until the fetal cardiologist was able to tell us what our son was diagnosed with- Hypoplastic Left Heart Syndrome (HLHS). Where the morning had been filled with heartbreak, the afternoon was filled with hope. Not only does treatment exist, it was noted that quality of life is fairly normal for most kids. Things could be ok.

But the journey has only just begun. We are now 23 weeks pregnant with our son, 16 weeks to go before the real battle begins. This blog is dedicated to him and to all parents who find themselves in this hard place. We hope our journey helps our friends and family know what's going on with us. We hope it helps them understand how to help us. For any who googled HLHS blogs and ended up on this page- welcome. We hope you find comfort and hope here.