Throughout June the Pediatric Congenital Heart Association is honoring Fathers by covering relatable topics through our guest blog posts. To kick off this month, we’re honored to have writer Rob Hart share his story.
Thirty minutes after my wife and I walked through the front door of Richmond University Medical Center, our daughter Abigail Joule was born. No anesthesia, ten minutes of pushing. Nurses were stopping by to meet Amanda. She was like a folk hero. This was on January 18, 2015. Two days later, the morning we were to be discharged, our pediatrician marched into the room and announced he heard a heart murmur, and even though it was probably nothing, we needed to see a cardiologist. We set a land speed record for hospital discharge. Amanda was signing a form with her right hand while she was getting a TDAP vaccination in her left arm.
“Bohemian Rhapsody” was playing in the car and I took that as a good sign. Twenty minutes later we were in the cardiologist’s office. He repeated what the pediatrician said. That it was probably nothing. A small hole that might resolve by itself. We put our tiny new baby on the crinkle paper and the doctor pressed the plastic wand to her chest. An hour later we walked through the door of our house and I made it as far as the steps leading to the second floor. I held my daughter tight to my chest and cried. Shaking, couldn’t breathe, coming apart crying.
She was five pounds, two ounces. Barely bigger than my forearm.
Tetralogy of Fallot is a cyanotic heart defect that occurs in about 400 per million live births. Four abnormalities are present. First is a narrowing of the pulmonary valve, which reduces blood flow to the lungs. Second, there’s a hole in the wall that separates the two lower chambers, causing oxygenated and deoxygenated blood to mix. Third is an overriding aorta—a normal aorta branches off the left ventricle. Here, though, the aorta is shifted to the right, so it receives blood from the left and right ventricles. All these things serve, over time, to reduce the amount of oxygen in the blood. Finally, because the heart is pumping harder to keep oxygen levels up, it causes the wall of the right ventricle to thicken. This can cause stiffness and eventually failure.
The cause is unclear, and it can only be repaired with open-heart surgery, usually within the first year of life. It involves widening the pulmonary valve, sealing the hole between the chambers with a patch, and trimming muscle from the right ventricle. The surgery carries a low risk—five percent perioperative mortality. When successfully repaired, it carries little impact on the ability to live a normal life. Shaun White, the Olympic snowboarder, was born with Tetralogy of Fallot, which required three surgeries to repair.
This is what happens when you have a baby with a rare congenital heart defect: You have to decide who to tell. First off is parents, obviously. Then employers and close friends. You don’t put it on Facebook. But you do tell your agent and your publisher. With your first novel coming out in June, and with so many moving parts in the publishing process, you need to let them know things are about to get unpredictable. That’s the e-mail, the one going out to people you don’t know on an intimate level—people you’ve never seen in their pajamas—that the reality gets too heavy, and you need to hold the baby for a bit to calm down.
You worry how this is going to impact the release of your novel—whether you’ll have time for promo of if you’ll have to cancel your launch party—and then you hate yourself for thinking that. You read about Tetralogy of Fallot on the Internet. Then you stop reading about it because you figure it’s better to get information from an actual doctor. That lasts for a few hours, and then you go back to reading about it.
You try and get used to your baby being tinted slightly blue. She’s cyanotic, given the lower level of oxygen in her blood, so she’s never pink the way a baby is supposed to be pink. And it gets worse when she’s cold or crying and can’t catch her breath. You never get used to this.
You don’t sleep, even more than you wouldn’t have. You drink a little more than you would have, then you hate yourself for drinking because what if you need to drive to the hospital?
Every time you go to the doctor, you think they’ll have screwed up somehow—that they read the echocardiogram wrong, or there was some dirt on the stethoscope, and she doesn’t have it, no harm no foul. Every single time.
You spend a lot of time sitting in the nursery with the lights off, letting your daughter nap on your chest. She is so small. So perfect and yet not-perfect.
We met with the surgeon on a wet, cloudy day, at NYU Langone in Manhattan. He sat us down in his nearly-empty office overlooking the East River. He opened a binder full of diagrams of heart defects, the hearts shaded in deep blues and reds. At the Tetralogy of Fallot page, he said, “This is the least scary page in here.”
What he meant was that the surgery had a high success rate, and otherwise there didn’t appear to be any other complications. The surgery would happen when it needed to happen. Sometime within the next few months. It would depend on a number of issues: Abby’s oxygen levels, how well she was putting on weight. The latter was an issue. She had fallen under five pounds by her first official visit with the pediatrician. Every time we brought her in for a check-up, she failed to meet her goal weight. The pediatrician called it “failure to thrive” and it was probably maybe related to her heart condition.
So we fed her, a lot. She puked, a lot. We switched from regular burp clothes to more robust towels. Every time we went in to get her weighed, it was a guessing game. “It’s been this many days and the doctor wants her to put on an ounce a day so she should weigh this much…” She always weighed under that number. Which was a great way to make us feel like we were failing as parents. But in time we got used to the frustration and the constant feeding, to the point where things almost felt normal.
And then, one day in March, we went in for a routine check with the cardiologist—two months out from when they were thinking they’d maybe do the surgery—and her oxygen saturation, which should have been between 95 and 85 percent, was hovering around 70 to 75.
A few hours later, we were in the hospital. When the medical team wheeled her out of the room to take her down for pre-op, she had been sleeping, and my wife asked if we could say good-bye. We took turns kissing her on the forehead, and she woke up and looked at us, and even remembering that is hard. We ate a big diner breakfast across the street from the hospital. We thought about taking a walk but it was too cold so we went to the waiting room. I can’t even remember how we passed the time. It just passed.
Six hours later and we found out that she was too small for the full repair. The surgeon said he could have tried, but it would have increased the risk of complications in the future. So they put in a shunt—a new pathway for blood to travel so her oxygen levels would increase. That would allow her to grow more before they tried again.
We had to come back sometime in the next few months. I knew the surgeon did his best but still I wanted to hit him.
This is what happens when you have a sick baby who’s still sick after one open-heart surgery:
When you want to pick her up, you scoop her up under her butt and upper back, because for six weeks after surgery, her breastbone is healing. Picking her up under the arms could put too much pressure on it and cause it to crack. You have recurring stress dreams about picking her up under the arms and cracking her breastbone. You’re back to not sleeping.
You get a pile of medicines she’ll need to take until her next surgery: Baby aspirin to thin her blood, Enalapril to keep her blood pressure down, Furosemide to prevent fluid retention, Omeprazole for acid reflux. You come up with carefully choreographed feeding schedules so she’s less likely to puke them up.
You get used to explaining Tetralogy of Fallot. Because the day before her surgery you made it “Facebook official.” For as conflicted as you feel about that, at least it’s efficient. And you’re tired of telling everyone things are fine, because things aren’t fine.
You get invited to read at a bookstore in Texas when your novel comes out in June. The next surgery is tentatively scheduled for August, but you can’t commit to travel, because what if it gets moved up? You get frustrated, then hate yourself for being frustrated.
As you get closer to the second surgery, you find yourself with more time to reflect. The first one happened so quick it felt like it was over just as soon as it started. Suddenly you’ve got an elective date that’s weeks off. You know what to expect and you’re not sure if that makes it easier or harder. You look at your schedule—columns to write, deadlines to hit—and you put them aside so you can sit on the play mat with your baby and laugh and clap because she’s figured out how to roll over.
You do this because you know a friend of a friend who died after going in for knee surgery, and you have to accept that these moments with your daughter might be the last time you get to spend with her.
The day we took Abby in for her second surgery in August, we handed her to a lanky German anesthesiologist who kissed her on the cheek, and we didn’t cry for nearly as long as we did the first time. We ate a big diner breakfast across the street from the hospital. We took a long walk crosstown to Barnes & Noble. My book had been out for two months at this point. We found a few copies tucked in the fiction section and my wife re-arranged the shelf so they were facing out.
We went back and sat in the lobby. I tried to read The Things They Carried by Tim O’Brien. I kept having to go back to re-read the parts I glossed over. After six hours, about the time they told us it would take, we were getting antsy. Someone was supposed to come out and get us, bring us into the room, wait for her to arrive. That’s what happened last time. Every few minutes, we checked the clunky phone the nurses had given us.
And then the surgeon appeared, smiling.
Sometimes with this surgery they can’t preserve the heart valve, which necessitates a replacement later in life. They preserved it. Her pulmonary arteries were still a little narrow, and they might grow, or they might require widening at some point in the future. But that can be done with a balloon in a catheterization laboratory. There are no guarantees in life, but the chance of her needing another open-heart surgery is extremely low.
This is what happens after your daughter’s second open-heart surgery, when she gets a clean bill of health: You can make travel plans again. Maybe a book tour when the second novel comes out in February. You can plan things.
You realize this and you cry, again, but it’s not sad crying, and it’s not even happy crying, not really. It’s that last bit of fear and uncertainty and anger getting wrung out. It’s like a torn muscle healing itself, getting stronger. It’s knowing that you’ve reached your emotional limit, that you’ve faced down the worst thing you’ve ever experienced, and you got past it. With the love of your wife and your family and your friends. For this beautiful little girl who is now perfect-perfect, even though she already was in the first place.
Things go back to normal, so that when she’s screaming at you while you’re trying to eat dinner, you just get flustered like any normal parent. But then you take her up to bed and lay her on the changing table and she is so pink. Pink the way a baby is supposed to be pink. You trace the mottled line running down her chest, and touch her lips and fingertips and ears, and the little point of her tongue that she sticks out at you. She is flush and full of possibility.
You realize that this terrible odyssey is now nothing but a story and a scar. And you are thankful in ways you didn’t know were possible.
Rob’s story originally appeared on The Good Men Project.
Rob Hart is the author of New Yorked and City of Rose. His short fiction has appeared in Thuglit, Joyland, and Helix Literary Magazine. His non-fiction has appeared at Salon, the Daily Beast, and the Powell’s bookstore blog. He lives in New York City with his wife and daughter. You can find him on the web at www.robwhart.com and @robwhart.