Glass Child

“There’s something wrong with her heart.”

Those six words change our lives forever. I’ve written about it extensively on my blog, I’ve ranted passionately to my friends, I’ve been upbeat on my social media (because that’s where we live our best lives), but those six words were devastating in the moment. I stared at my husband when he said that and thought “My daughter? My sweet, tiny, six-day-old infant has something wrong with her? I messed up when I made her?”

We listened to the doctors trying to explain to us what was going on, telling us we needed to go to Dallas to the children’s hospital there for more testing, more scans, more more more. It was all so surreal. They gave us the virtual alphabet soup of what was wrong with her, but it wasn’t sinking in. I had two other children at home to take care of, how was I supposed to do that? I was still bleeding heavily from an insane home birth, where this tiny perfect child had almost literally fallen out of my body into her father’s waiting hands. He almost hadn’t caught her.

Had that been when it happened? Had something in her birth caused all of this? I was smart enough to know that it wasn’t, but in my daze of paranoia and fear and trying to figure out what was going on, all things were possible.

I called my mother, trying to remain calm, to make arrangements for my sons, ages two and four. She picked up on the third or fourth ring, always fumbling for her phone in the pocket on the outside of her purse.

“How’s the appointment going? Are you still there? It’s taking a long time.” I could hear in her voice that that wasn’t a good sign. She was a medical doctor. If she was here, she’d know exactly what the doctors were saying. It would make sense to her.

“There’s something wrong with her heart,” I repeated, my voice breaking.

“What? What’s wrong with it?” her voice sounded confused. “What did they say?”

I repeated what they’d told my husband and he’d repeated to me, sure I was saying it wrong. She was silent for a beat. “That can’t be right. If that was the case, she’d have died the night she was born. You must have heard something wrong. Did he write it down?”

I shook my head. “No, but they want us in Dallas tonight.”

“In an ambulance, helicopter, or can you drive yourself?”

“We can drive.”

“Then it’s not what you just said. I’ll bet it’s something less severe. I’ll pick up the boys and meet you at your house.”

Half an hour later, we were all at the house, trying to pack for a hospital stay, duration to be determined. The boys were excited about a weekend with grandparents, I was trying to figure out what to do next. I’m a planner and having everything be so ephemeral was not helpful for me. I grabbed everything I would need for a weekend, plus a couple extra days, then decided that was enough.

“Do you want me to come with you?” Mom asked. “I can talk to the doctors and get exactly what’s going on. The kids can stay with their other grandparents. I can probably be more helpful to you at the hospital than anyone else.”

“Yes,” I said without thinking. “That would be the best way you could help.”

My husband was already on the phone calling his parents. We knew they’d be happy to take their grandkids for the weekend, or longer, if needed. He grabbed his laptop and packed a bag with clothes. We packed clothes for the kids, not even sure if it was clean or not. Honestly, thinking back, we may have sent along their dirty clothes basket, thinking they could just wash that and wear those clothes. We also sent along a case of diapers for the two-year-old and pull-ups for the four-year-old (potty training was…not going great).

At the hospital, Mom’s confusion over my daughter’s diagnoses was put to rest. When we’d had our initial newborn visit earlier in the week, and the first concerns about her heart were raised, Mom had mentioned a PDA, patent ductus arteriosus. I had looked it up and been reassured. It’s a small bridge between the two major vessels in the heart, the pulmonary artery and the aorta, and is present in all babies in the womb. It usually closes shortly after birth, but my daughter’s was large enough, it hadn’t. It was likely never going to.

She also has L-TGA, Levo Transposition of the Greater Arteries, which meant that her pulmonary artery and aorta were swapped where they attached to her heart. There’s another version, D-TGA, Dextro. Dextro people get no oxygenated blood pumped out to their bodies, and they die quickly. Levo doesn’t have that problem. The arteries are switched, but they get oxygen. This is the one my mom was super confused about. If she’d had D-TGA, she’d have died the night she was born, due to lack of oxygen. All my husband heard was “transposition of the greater arteries.” He hadn’t heard the levo. If you have to have one, that’s the one to have.

She also has an ASD and a VSD, Arterial Septal Defect and Ventricular Septal Defect. Holes in the walls between the chambers of her heart. This allows the blood to pass back and forth between them. Because of the other issues, the ventricles are doing work they aren’t supposed to do (the right ventricle of the left, the right atria of the left) and that makes them weaker).

And just for fun, she also has a Pulmonary Stenosis, a thickened pulmonary artery where it is attached to her heart. Because all that above wasn’t enough. We needed just that little bit of extra for fun.

It was all so overwhelming, and my brain was in a fog from exhaustion and soreness from having a baby less than a week earlier and sitting in a car for three hours and fielding phone calls and texts and meeting my older sister at the hospital and checking in and trying to wrap my head around this tiny, perfect, sleeping child in my arms having this messed up lump of meat beating in her heart.

The most difficult thing to comprehend was how it was all, incomprehensibly, working together, somehow. One thing went wrong in development, so the body self-corrected by making something else go wrong, and then another, and another. So, we ended up with a domino effect to the point that she’s a perfectly healthy child. But that day, that weekend, we sat, staring at monitors for hours on end. A room of darkness, lit only by the eerie glow of the green lights tracking her oxygen, pulse, blood pressure, and whatever else they were checking.

She had sonograms on her head, her stomach, her entire body. They x-rayed her from head to toe. She had echocardiograms, the first of dozens so far. She was hooked to countless machines nearly constantly, the only time she was unhooked was to move from one machine to the next.

When she was x-rayed, the technician asked if I was pregnant, a moment of levity in the weekend. I looked down at my week-old baby and said, “It would be a literal miracle.”

We saw nearly every person on the medical spectrum, from medical students on up. The medical students got laughs from us and learned a lesson on bedside manner. It was lucky for them we were so gracious and forgiving, and the children of medical doctors, because they stuck their heads in and said “We hear your baby has a really cool heartbeat. Can we hear it?” Though they will have to get over their embarrassment at a woman breastfeeding if they’re going to work in a children’s hospital, or with children at all.

We were given instructions on how to have people outside our household interact with her: handwashing, no one with a runny nose or cough could hold her, be cautious around cold and flu season. We took this all seriously. Most of our friends and family did too. There were a few outliers, but what I didn’t realize was how isolating it would make me feel, and how alone her safety made me become. I had been involved in MOPS, and enjoyed that for the most part, but I didn’t feel comfortable leaving her in their childcare, so I kept her with me most of the time that spring after she was born. I can’t remember if I left her the following year or not. The playdates were a bust, with no one but me showing up to them, and I’d already been nervous, taking this glass child to indoor playgrounds with other people’s children that I didn’t know well. That was my last year.

I didn’t have a lot of friends at all, but no one came over to visit after she was born, so I was left alone in my house with three young kids. I sent them to the church daycare, and we stayed home.

Six and a half years later, she’s still going strong. And she’s gotten stronger. We still have to sit and periodically stare at the glowing green lights in the dark rooms, waiting to see if those holes have changed or grown. She’s still at risk for a lot of things, like heart block and is at increased risk of respiratory illnesses (Covid is super fun). She’s got a lot of spunk and personality. She’s not afraid of doctors. She’s had one procedure, but that was on her eyelid, a totally unrelated thing, though because of her heart, we had to have that done in Dallas. She’s stubborn and obstinate and we joke that she’s either going to rule the world with an iron fist or kid gloves. She had a tender heart and also an iron will. She wants what she wants, but she also wants fair treatment for all. She sees the world in black and white a lot of the time but wants to paint it in rainbows and glitter. She loves to read books of all kinds, but only if they have pictures. She’s a people person and being stuck at home for sixteen months has been hard for her. She has her younger sister to keep her company, but it isn’t the same as kids her own age and school.

I’m hoping that with Covid hopefully going away, her life can return to some semblance of normal, but who knows. She’s never had a life that most would call normal. She had an intense home birth, she was always making her own way. Sometimes, it would be nice if she was a bit less of a trailblazer and a bit more of a follower, but I suppose eventually, she’ll figure it out. She’ll find a happy middle ground. Or maybe an unhappy middle ground. Or stay on her current path of “making everyone mostly unhappy while I machete the way forward using a butter knife and scream like a wounded pterodactyl.” You know. Whatever.

Whatever she does, it’s going to be interesting to watch and attempt to guide her (while staying out of butter knife reach) as she paints the world with rainbows and glitter, making art and writing books and attempting to right the injustices she sees. While also causing a few she doesn’t. She’s just like any other kid, just with a messed up lump of meat, beating away, powering the whole engine, loving fiercely and determinedly. I would change a few things, but, on the whole, I’ll keep her. Most of the time. Today, anyway. Check back tomorrow.