Author’s Note: You’ll notice that I don’t include my husband’s thoughts, feelings, or opinions much in this story—and it’s not for a lack of emotional presence. My husband is in many ways my rock and anchor, a constant and steady sea, who owns his own version of this struggle. The account you read here today is from my perspective only, but please know that his support was ever present through it all.
There’s a tangible moment in the ultrasound room when you know something is medically different about your unborn baby. I hope you don’t know what I’m talking about, but if you do, I’m sorry that you’ve found yourself part a club in which nobody wishes to become a member. For our family, we were initiated by a simple Doppler check at nineteen weeks—one that I boldly recorded on my phone to send to relatives. Despite already having four bleeds (deemed ‘threatened miscarriages’ with unknown sources) in the pregnancy, I decided to hold fast to the belief that the baby’s heartbeat would be present. My recording was somewhat of a souvenir, in the event that it could one day be a simple memory in the camera of my mind. I listened to it over and over, without the knowledge that it held a rhythm that would change the course of our pregnancy. That Doppler check quickly became referral for a Fetal Echocardiogram.
Rhythm of Change
Premature Atrial Contractions (PACs) are a benign arrhythmia, often experienced by fetuses in early pregnancy. While harmless, they can be a signpost, pointing to a more serious problem. When you think of a heartbeat, it usually sounds like the gallop of a horse or the rhythmic chugga-chug of a cartoon train. PACs, however, sound like a toddler banging maniacally on an upturned saucepan with a wooden spoon—so was the beat of our son’s heart. I wasn’t overly concerned, because at this point I was told that my proclivity towards caffeine addiction could be the culprit, and was advised to kiss coffee (AND chocolate) goodbye until our baby’s birthdate. Forty-five minutes into the uneventful fetal echocardiogram, the radiographer told me she saw nothing of concern, but it was routine to call the cardiologist in for a few final images. Enter Dr. Amazing—that’s what we’ll call her for the story.
Pressing the camera to my swollen belly covered in jelly, the doctor methodically went through the motions. This next part seems embellished for literary interest, but I kid you not, this is the way it all went down.
“I think we’re done here—everything seems great,” Dr. Amazing stated, about to put the camera away. Suddenly, her interest piqued towards the snowy screen, gaze fixed as sternly as her expression. My shirt was still up under my boobs, my belly was still out for all to see, and I was still lying on the table staring at some unintelligible moving shapes that were somehow the beating heart of my only child. We were not done, and everything was not great. Dr. Amazing didn’t say anything for a few minutes, which is a telltale sign that you’re not going anywhere.
“Have you ever seen his heart go this fast before?” the doctor asked. I could see a flutter like a hummingbird’s wings, and noted the speed in the margin of the ultrasound up near two hundred beats per minute.
I shook my head, “No. What does it mean?” “I’ll tell you in a minute,” Dr. Amazing stated, her eyes never leaving the screen. “I need to watch for a bit.”
Not Alone, but Lonely
The next hour or so was governed by a silent movie, where the star of the show was my unborn son’s fractured heart and its wounded beat. When the cardiologist was done, I wiped my belly as they left the room with a promise to soon return with information. Though I hadn’t technically been ‘alone’ for twenty-one weeks (thanks to my fetal companion), I sure as heck felt alone at this point. My husband, who had been present at all of the appointments until now, wasn’t with me this time, and I really could’ve used his hand to hold. At the same time, I was grateful for his absence, considering his heart was (and will always be) mending from the stillbirth of his baby brother a decade earlier.
Dr. Amazing returned with a folder, and a few sheets of paper inside.
“The heart has an electrical system, and your baby’s is working overtime. Structurally, the heart is fine, which is very good news, but there are too many pathways firing, which can lead to heart failure,” she explained. “He has Supraventricular Tachycardia, and it’s a totally treatable condition if monitored correctly.”
A Cardiology Crash Course
The next 24 hours were a flurry of logistics. I needed three appointments per week for the remaining half of the pregnancy—two at the regular obstetrician, and one echocardiogram at the Fetal Treatment Center of our incredible hospital. Incidentally, my OB was on vacation, so I was scheduled to meet with an unsuspecting substitute who admitted me to the hospital after twenty minutes of listening to the fetal heartbeat on her little AA battery-powered Doppler. Her paled expression told me that my son’s life was in danger, so I packed a bag and my husband and I stayed in the prenatal unit overnight. Going forward, the general obstetricians all but fired me, and we were now part of the high-risk obstetrics caseload, with three hospital visits a week.
For a while, the best parts of my week were having pink and blue elastic bands stretched around my bulging belly, holding monitors that would show my son’s erratic heart rate on a small screen. In those days, my eyes never left the screen. I was both anxious and fascinated by the fractured rhythms, racing beats, and beeping alarms that reminded me of the terrifying tightrope on which we were walking. Unless he was experiencing Supraventricular Tachycardia (SVT/super-fast heart rate) for more than 50% of the time, we would be better off with frequent monitoring rather than treatment with medicine. At first, I would watch the machines spit out long streams of paper, paying close attention to the comments of the medical staff. Week by week, I learned about arrhythmias, tachycardia, how to decode the information on the screens, and most importantly—the intricate workings of my son’s heart.
In addition to the three weekly visits at the hospital, I used a fetal Doppler to check the baby’s heartbeat every morning and night at home. For twenty minutes at a time, I would sit beside a stopwatch, timing the runs of tachycardia and frequency of PACs. At the end of each session, I would translate the information into a percentage, which would frequently teeter around 35%. As the days and weeks went on, the percentage crept closer to the 50% mark, but we never seemed to reach the magic number for medication. I was terrified that we’d somehow miss the moment his heart stayed fast, and he’d slowly, uncomfortably pass away. The thought of stillbirth haunted me, yet day-in, day-out, I chose to spend time “hanging out” with my fetus. I held onto the idea of getting to know as much about him as I could, as if every day may be our last. I played him songs that I liked, I told him about his family, I read him books that I dreamed of one day reading before his bedtime—all clean and cozily dressed in footed pajamas. Then one day, around twenty-four weeks, I knew that his heart was not doing well. With great sadness, I placed my hand on my belly and told him that if he ever heard Jesus calling him home, then he should go. I told him to run—fast—into the arms of our loving God, and his little life would not be without purpose. If God is good (and I believe that He is), then he could be trusted with my most precious possession.
An Unnerving Treatment
At a scheduled Fetal Echocardiogram later that week, we were told that the baby’s heart was beating too fast around 75% of the time. We were taken for a second ultrasound to see if the baby had fluid pooling inside his abdomen, a condition called Hydrops, as a result of heart failure. We were educated on the types of medication I was eligible to take, and what kinds of side effects I could expect. I would more than likely be admitted again, and our son’s life would, again, be caught in suspension. My heart seemed to slow to a grinding halt, as his sped up near three hundred beats per minute. The equipment at the hospital was halving his heart rate because it couldn’t compute the possibility of something so fast. The machinery beeped time and again, as we watched the medical professionals act positively with undeniably furrowed brows.
With a giant sigh of relief, we found out that our son miraculously had no signs of Hydrops. Apart from the obvious, his anatomy was perfectly formed, and if we could convert his heart rate, he would live. We chose a medicine that would go through my placenta and hopefully slow his heart, while helping it to beat to a more regular rhythm. To my horror, I found out that the same medicine is used in some abortions—injected directly into the fetal heart so that it will stop. I was educated on how to recognize toxicity levels, and what to do if I became sick. I needed an EKG on my own heart, and a full medical evaluation to determine that I was okay to take the medicine, considering the normal rate of my own heart.
A Slow Return to Normal
Within three days, our baby’s heart rate had steadied to a very normal 150bpm (with variability) and I had reached slightly sub-therapeutic levels of medicine in my blood, which meant we had room to adjust the dose if need be. With every visit to the Fetal Treatment Center and Antenatal Testing, I watched the monitors record normal readings. I began to close my eyes and rest, and slowly, began to feel as though our son would live a good, long life. Throughout the weeks, we began to make plans for the birth, and who would be present. We talked about what kinds of accommodations we’d need when he was earth side, and whether or not he would be taken to the NICU. Overwhelmingly, it seemed our birth would be as normal as possible, with the regular question marks of labor hanging over our head.
At thirty-eight weeks and five days, I was taking a scheduled non-stress test. My blood pressure and somehow skyrocketed and I was feeling the (literal) weight of being so close to due. Practically begging for the nurses to admit and induce labor, my pleas were granted within an hour—this was the day I had been waiting for. I called my husband, directing him to finish packing the ‘go’ bag, and we started an IV line of Pitocin. I’ll spare you the gory details of labor, but in about twenty-eight hours’ time, I held the most beautiful ray of light in my arms. We named him something that means, ‘God has helped,’ and I mean it with all of my heart. God has truly helped, and I am humbled, and in awe at the mercy He has shown.
A day later, our sweet baby was taken for his very first EKG in the nursery, where he passed with flying colors. To our knowledge, his unmedicated heart was relatively stable for his first four weeks of life. At bed time (notice I don’t say, “while sleeping,” because let me tell you—NEWBORNS DO NOT SLEEP—except all day long, and in someone’s arms) he wears a pulse oximeter on his foot, connected to an app which tells us his heart rate. In his fourth week, after consuming an unusually large amount of milk, a red alert sounded on the monitor. Scarily enough, he didn’t appear any different, meaning that he could have had episodes without us knowing. At 2:00 a.m., he projectile vomited, converting his heart back to a normal rhythm and I swiftly Uber-ed him to the children’s hospital.
Tiny Soul, Big Bed
That night, our sweet newborn was admitted into the Cardiac Intensive Care Unit and loaded with an initial dose of the medicine I was taking while pregnant. He stayed for two nights—a tiny little soul, in a bed too big. My husband and I took turns, either holding him or sleeping, inevitably becoming entangled in the wires and lines of the intensive care unit. The baby championed through all things, and was discharged with a heart that beat just like yours and mine. The medicine had proven effective yet again, and we were beyond grateful for the sweet gift that is our son.
Six months on, our baby is healthy, happy, and amazing. I swore never to tell his story without maintaining his privacy, since this tale is only half mine to tell. In time, I will hand the baton to my son, and he will own the rights to the story of the genesis of his life, making of this situation what he will. His heart, while completely functional, is not “fixed,” but instead, it is “managed” by medicine. He will go through times in his life where the tachycardia will return, and he will need to know how to control his own body. He will likely never be able to drink coffee, and maybe never enjoy a piece of chocolate, because even traces of caffeine can speed up his heart and make him unwell. But alive and well, we hold a giggling miracle in our very arms. My son is a gift to all those around him, living a life of deep purpose, humbly walking in the help of God.