When I Met a Baby With the Same Rare CHD as My Daughter's

“Just parked in the garage, heading to lobby now,” I typed on my phone before I hit send.

“Do you know where the heart ward is?” came the reply.

“I think I can find it…” I sent back.

That may have been the biggest understatement I have ever typed. Asking me if I know where the heart ward is located is like asking me if I know how to breathe. I had been there so many times I could probably make it there blindfolded. Yes, I know where the heart ward is. I know it all too well. Just acknowledging that fact reminded me of my tender emotional “state.”

Part of me couldn’t believe I was choosing to make this visit. The mere act of driving into the parking garage had already seemed strange. For the first time in a long time, I was arriving at this hospital alone. Normally, I have my daughter with me. She’s the reason I come here, the reason I already know that the babies with special hearts all hang out on the heart floor. I had already glanced over to the passenger seat multiple times, only to find it empty. The emptiness of that seat felt unsettling, but was actually a good thing. Not to mention how amazing it is to me that my daughter has grown enough to sit up front, but also that I couldn’t quite wrap my head, nor my emotions, around the fact that she was at school, where she should be, and not here with me at the hospital. Although it might sound strange, I was actually relieved she wasn’t with me. For once, I was not at the hospital for another procedure to maintain my daughter’s health. This time I came because I had another motive. Today, I came to meet Noah.

Amazingly enough, Noah is the first baby I have met, in person, who has exactly the same kind of congenital heart defect as my daughter. That’s because they both have an unusually rare form of CHD. It’s called truncus arteriosus. Yes, it’s a bit of a mouthful. It’s equally hard to say as it is to understand, even for those of us who know more about it. As my daughter often says, “Will I ever meet someone just like me?” Chances are not often. Chances are, almost never. That’s what made today so special. And that’s why, against all odds, I was going back to the heart ward, voluntarily.

As I entered the garage elevator, I paused to take a breath. It never ceases to surprise me how much a trip to the hospital affects me. Just when I think I have it all together, I quickly find that I don’t. I have to “adjust” every single time I walk into this building. I have to remind myself again that I can get through this. I don’t always want to, but today I needed to, because today was about Noah and not about me.

By the time I had navigated through the maze of hallways and ridden a second elevator to the correct floor of the hospital, I had gathered myself enough to walk down the hall toward the heart ward. Or at least I thought I had. That all changed the moment I pushed the buzzer for admittance and waited while I watched the painstakingly slow, double doors open. Each excruciating second that passed felt like an hour. Perhaps that was a good thing. It gave me yet another attempt at composure, a moment to think.

Five years ago was the last time I walked down these halls. Like I said before, my daughter and I had come back to this hospital for multiple procedures, but the only reason we would ever come to this particular floor was after something big that required a long stay. I was so grateful to realize it had been five years since my daughter had endured anything that involved. I rested inside another huge sigh of relief… and then continued to wait for the doors to finally grant me admittance.

When the heart ward finally came into full view, I was struck by the fact that while everything before me had subtly changed it had, at the same time, stayed exactly the same. The doorknobs were the same. The handrail was still in the same place. The windows still looked out at the same vista. The floor had the same tile. Everything looked just like I had left it five years ago except for the walls. They had that fresh, newly painted look to them. Unfortunately, the fresh paint couldn’t cover up the smell. The smell that will always be indefinably the same. It’s the smell of longevity and endurance and it is unique to those floors in a hospital that hold on to their patients. After my daughter’s first heart surgery she was in a ward like this for eight weeks. Some get released after only five days. Some stay even longer.

The nurses at the station in the middle of the floor had different faces, but thankfully still wore familiar scrubs. In a way, it was comforting the scrubs at least had stayed the same. It brought recognition to strangers.

“Can I help you?” one of the nurses asked.

“Room 421?” I answered, pretending that I didn’t know which way to go rather than stumble my way through a monologue of reasons why I already knew where the room was located.

“That way,” she answered and pointed down the hall.

I walked in the direction she had pointed, but I struggled to make my feet move. I was stuck in an internal, emotional debate over where I was and where I should be. I wanted to be comfortable being in this hallway, but I wasn’t. I wanted to keep my former experience separate from this moment, but I couldn’t. I wanted to put it all behind me so I could be supportive for someone else, but it was difficult. More difficult than I expected. Unfortunately, it was too late to change my mind. Even my slowly moving legs had propelled me forward enough to make it to the correct door. It was time.

As I walked into the room, the memories crashed over me in a flood of flashbacks. I was transported back to a time that seemed like only yesterday. I remembered everything. I had been here before. I had been in a room just like this before. This room designed to fit a crib, a couch that folds into what some would like to call a bed, a reclining chair, a sink, a small closet, and medical equipment. It was all out of balance and it temporarily threw me off my purpose.

Then, I saw Noah.

And I remembered why I was there.

It was like the clouds parted and a ray of sun burst through. This was it. This was the moment. This was my chance to move beyond the pain and the fear. I was here today to give hope to the people in this room, all the people in this room, including me.

I found connection with three people who needed no introduction to our story; we already had an instant camaraderie. That camaraderie gave me a sense of clarity and strength. A sweet breath of restoration that I didn’t predict. An unexpected gift I could give and receive at the same time.

No matter what comes next, and there will be plenty of “nexts” to come for all of us, together we could know and understand that our heart warriors are strong in a way that is impossible to define. Together, we could hope in their future and in the success of their fight. Together we could trust that we can do this. It’s possible. Not easy, but possible.

I was able to say all of that just by saying, “Hi.”

It was an honor. A privilege.

I’m glad I didn’t miss it.

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Thinkstock image by Ryan McVay