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What It Was Like to Find Out My Child Has CHD

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I’m excited. I have been for weeks. They told us this appointment would be the one where we find out if we’re having a girl, which I’ve suspected since I found out I was pregnant. I can’t stop talking the whole 30 minute car ride to the hospital. Not really about the appointment, just in general. I’m too excited to sit in comfortable silence with my husband. He is quiet. He is always quiet, but I see the small tug at the corners of his mouth; he’s excited, too.

They call us back to begin the scan. The room is dark and warm, almost like a cave. It could be cozy if not for all the medical equipment everywhere. I have started to become comfortable with the fact that my dignity is of no consequence here as I adorn the hospital gown and get situated for the scan to begin. The tech performing the scan is sweet. She’s young, maybe younger than we are. She is very friendly and I think immediately I like her. My husband takes my hand as the tech squeezes warm goop from a tube and digs the probe into me.

I’m still talking. I love new people, especially people who are about to show me my little kiddo, so I make conversation with the tech as she begins searching for features and charting measurements. She is animated too, and I think she may like me as much as I like her. The conversation ebbs and flows as I try to contain myself so she can do the work she is here to do. She tells us what we are looking at: a hand, a foot, a back. She finally tells us exactly what I have been hoping to hear: we are having a girl. I grin wildly at my husband and he smiles back at me. I say “see, I told you so!” and he chuckles and assures me he never doubted me for a moment.

We are lost in that moment for a while, until I realize how quiet our tech has become. I look at the monitor. By the rhythmic movement on the screen I know we are looking at her heart. We aren’t just looking, though. The tech is scrutinizing. She is measuring and re-measuring. She jabs the probe harder into my gut. It hurts, but I’m more interested in what she is looking for. The smile she had been wearing has completely faded and her brow is furrowed with concern and determination. This goes on for what feels like an eternity — the silence becoming loud, uncomfortable, frightening. I think my husband feels it, too. He keeps watching her. His hand starts to sweat and I let go because it’s too much to add to everything I am feeling right now. My heart is pounding. I finally ask, “What’s going on?”

The tech jumps slightly. Sound has become so foreign in this place that it has startled her. She composes herself and tells me she is just doing a more in depth scan of the heart. She is back to silence. I go back to it, too. I don’t know what else to do. My husband speaks this time, “Is something wrong?”

She falters. She seems to be thinking carefully about what to say, “I’m almost finished and then the doctor will come in to discuss the scan. I’m not really allowed to interpret anything.” She looks at me briefly with concern, but then immediately sets back to it. Once she has all her images and measurements, she helps me clean the goop off my belly and tells us that she is going to get the doctor.

We sit in silence. I’m not excited anymore. I’m terrified. Even though we haven’t been told anything, I can feel the tension from what has just transpired. Adrenaline is pumping as my fight or flight instincts are in full force. I’m talking myself down. I’m telling myself to relax. I look at my husband. His leg is bouncing and it’s shaking the table I’m sitting on and it’s making me furious. I have to bite my tongue not to yell at him to stop. I have just enough of my wits about me to recognize the anger is from fear and it’s not fair to be so angry with him. It’s been an eternity. What are they waiting for? Where are they? Don’t they understand how long we have been waiting here? My husband starts to pace. He seems tense and frustrated. “I’m going to go see what the hell is taking so long,” he says.
“Go for it. This is unreal. They can’t just leave us here all day,” I say.

He heads for the door but it opens before he can reach it. It’s the doctor. I don’t know who he is. He introduces himself calmly. I’m trying to read him, but he has mastered his poker face from years of practice. His tone is casual as he begins: “Mr. and Mrs. Crawford, we saw some anomalies on the scan with your baby’s heart. It appears to be much smaller than is typical at this point in gestation. It could just be the way the baby is positioned, but just to be on the safe side, we will have you meet with a pediatric cardiologist next month and do another scan.”

One month. We have to wait one month to know if there is something wrong with our little girl’s heart. The month is long and we are exhausted. The drive back to the doctor this time is somber and silent. There is no excitement here. We don’t talk about it or set any expectations. We are preparing for some kind of battle and we cannot arm ourselves with false hopes.

The scan is much as it was the last time. This tech is not as friendly or as happy as the one before, but I find I don’t care. We are all quiet this time and although the silence is heavy, I can’t imagine having to engage in small talk right now. When she’s done, she tells us the doctor will review and come see us in a moment.

Dr. Bramlet comes in. He is young and handsome and dressed impeccably. He is confident, bordering on arrogant, “Mr. and Mrs. Crawford, your daughter’s heart did not form correctly. Based on what I’m seeing, it is likely she has something called tricuspid atresia, but it’s too difficult to tell in utero. When she is born, we will do a scan and determine what exactly is wrong and make a surgical plan based on that. Likely she will need several surgeries, but I can’t really be more specific until we know exactly what we are dealing with.”

He continues. He is matter of fact. He is neither warm and bubbly nor cold an unfeeling. His approach is clinical and I appreciate that. I need someone to be clinical. I need him to be this way because I cannot think critically right now. He begins talking about different surgical options and they all sound like science fiction.

He’s still talking, but it’s become hard to hear him over my own thoughts. The more things he says, the more I realize the dream I had for this little girl and our family is gone. I’m not crying yet. I don’t really know how to mourn this. I can only sit there and listen to this man tell me medical terms I don’t understand and explain procedures I didn’t know existed, “It’s important to remember that kids born with congenital heart defects, even ones as severe as your daughter’s, can live fairly normal lives.”

Hope. He offered us hope. I cling to it. I mentally start to pull back out all the dreams I had just thrown away and start to smooth them out again. My husband takes my hand. It feels rough and warm and so good right now. He’s here. He’s in this with me. Him and I together. We continue to listen, and I squeeze his hand to let him know I’m here, too. When it’s all over, we have new appointments, a new hospital, new testing, more scans — our docket is full and our heads are swimming. We drive home, talking a bit more now. It’s the first round of a game we will play countless more times in the future: focus on the hope.

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Getty image by monkeybusinessimages

Originally published: February 8, 2018
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