In my nightmares, it is a place of gothic horror– eerie, narrow hallways leading to an ominous waiting room, at the end of which is a doorway leading to darkness. In reality, however, it was none of those things. It was a nondescript hospital waiting room with two excited parents, eager to confirm the gender of our surprise baby. Good Friday, March 30, 2018.
In the days leading up to our 20-week ultrasound, we had been waffling back and forth on names. Naming the baby seemed to be of utmost importance, and nothing seemed to fit. Afterwards, after the shock of the diagnosis, after our world had been totally and completely rocked, the name would come to me as I was sitting in church for our Good Friday Tenebrae service. Daniel. If the Biblical Daniel could trust in God above all things, then we could trust God through this, wherever the road leads. “for he is the living God, enduring forever; his kingdom shall never be destroyed, and his dominion shall be to the end. He delivers and rescues; he works signs and wonders in heaven and on earth, he who has saved Daniel from the power of the lions.” (Daniel 6: 26-27)
This baby is our third. We had been through the 20-week ultrasound twice before with David (3 1/2) and Hannah (almost 2). This visit seemed routine. We have both a boy and a girl, so we truly didn’t have any gender preferences. When asked, we said rather absent-mindedly that we were just hoping for a healthy baby, never really considering that he/she could be anything else. Until our ultrasound technician saw Daniel’s heart on the screen. Brow furrowed, she tried for 40 minutes to get pictures of the heart. Like all ultrasounds, she couldn’t give us any news until the doctor had spoken to us, so we waited in silence while she tried in vain to capture Daniel’s left ventricle on the screen.
If this had been my first or even second pregnancy, I would have been pumping her with questions. But it is my third. Never has the ultrasound technician taken 40 painstaking minutes to see the heart. Never has a heavy cloud of dread so permeated the room. I stayed silent, knowing something was wrong. In hindsight, I knew his heart looked different, having been through ultrasounds with David and Hannah. I was willing her to find what she was looking for, willing the doctor to come in and say that everything is perfect.
When she left the room to find the doctor, I turned to Brian and said, “I think something is wrong with his heart. She took so long to look at it, and something looks weird.” Brian, ever the optimist, said, “No, I think he was just being difficult and in a weird position. I’m sure everything is fine.” I shook my head. No, something is wrong.
When the doctor came in the room, he said rather haphazardly, “Well, this baby boy looks perfect, except for his heart.” With his nonchalant words, my entire world fell apart. All the illusions of control–of myself, of my body, of my children–shattered on the floor.
I will attempt to capture the conversation below:
Staci: “What? What’s wrong?”
Doctor: “Well, his left ventricle is underformed.”
Staci, an English teacher who hasn’t had biology in 15 years: “What?”
Doctor: “It is called hypoplastic left heart syndrome.”
Staci: “What does that mean?”
Doctor: “Well, it means surgeries.”
Staci, getting rather irate and flustered: “What do you mean? Will my baby live? What do you mean?”
Doctor: “There are many complicating factors that could make palliation difficult. We have to schedule an echocardiogram to gauge the severity of his defects. We will give you a call later today to schedule the echo. We will try for next week.”
We left the ultrasound soon after. Brian, numb with shock. Me, a blubbering, inconsolable mess. I was desperately clutching the ultrasound pictures of our precious baby boy, the initials HLHS written on the side. I had no idea what a ventricle was or what this diagnosis meant for our baby boy.
What happened next was a series a phone calls. First to my mother. Then to my mother-in-law. Then, to my brother and sister-in-law, both surgeons in Houston at Hermann Memorial Hospital.
Later in the day, my brother and sister-in-law would give us our first hope: “Staci, we will get you in with the best team we can find. Daniel may not be a professional athlete one day, but he, and you, will make it through this. Don’t worry. It is amazing what modern medicine can do.”
The following morning I would receive my second beacon of hope– Anna Jaworski. Somehow, my aunt Pam was connected to her on Facebook. Pam told me that she had a friend who has experience with HLHS. Anna and I spoke on Saturday morning, the day after the diagnosis. Amazingly, I found out she has a 23-year-old living son with HLHS. His incredible story of healing reminded me that truly, with God all things are possible. We are talking about the creator of the UNIVERSE here. Surely I can cast all my cares upon him now?
I will be detailing what happens next in further blog posts. I wanted to try to capture D-Day as we experienced it then. Where I am now– spiritually, mentally, emotionally, physically–is nowhere near where I was then, and I hope to share with you the journey. I have had the incredible opportunity to get to know many other mothers who have children with congenital heart defects. I am am so thankful for their willingness to share their stories and to reach out to a complete stranger. With this blog, I hope to do the same for someone else.
For those reading who may be experiencing something similar, know this: it gets better. It is AMAZING how God provides for your every need in all circumstances. All my experiences since then have showed me in real, tangible ways that– “The Lord is near to the brokenhearted and saves the crushed in spirit.” (Psalm 34:18)