I switched providers in my 33rd week of pregnancy because I wanted the most natural, unmedicated child birth possible. Ironically, at my first appointment with my new doctor, I was admitted to the hospital and quickly overflowing with, as my third high-risk pregnancy doctor described, “near toxic IV doses” of two heart medications. So much for unmedicated; my baby boy had fetal atrial flutter.
The pediatric cardio-electrophysiologist was called in from a nearby hospital, and we watched together on the ultrasound screen as my baby’s heart’s atria beat just over 500 times a minute, and the ventricles around 250. To be honest, at that speed I could barely tell his heart was beating; I saw a slight quiver, looking stressed and hopeless. His valves, too, had trouble coordinating with the flutter that was so fast they did not have time to open and close; whatever blood made it from one chamber to the next was flowing back, “a tricuspid regurgitation,” I was told. His heart was enlarging, too, a consequence of being so stressed and tired, but a side effect of the flutter that will also disappear as he remains in sinus rhythm longer.
Soon I would meet at least 12 doctors, each introducing themselves with the token, “I’ve heard so much about you and this baby; it’s good to meet you.” I wondered what they had heard. Did they know his name, Emilio Lawrence? Did they hear that I was a teacher with loving students nervously awaiting news of why I was not at school? Did they know we don’t have family in town and have been training our dogs for months with a life-size, weighted doll? Did they hear how scared we were? I imagine not.
I imagine they heard I was having contractions, two centimeters dilated, 50% effaced, first pregnancy, atrial flutter, and that after the first dose of IV Digoxin my boy’s heart plummeted to a dangerous 80 beats per minute, a reaction the neonatal cardiologist had not seen in 25 years in practice.
Everyone who worked with me was overflowing with kindness, but I missed home, I missed having control, I missed my dogs, and I missed predictability and normalcy. With the medicines, they were able to convert his heart to a healthy sinus rhythm three times, but each time after days or hours he regressed back to flutter.
These small reprieves of sinus, a rest for his sweet little heart, bought us time. I was prepped with steroid shots to help develop his vulnerable lungs for an emergency C-section, but with each sinus rhythm, our clock started over. The effects you see after 48 hours in flutter were diminished, he was staying strong, and most importantly he was staying inside me.
There is something reassuring about treating your baby during gestation because really, the doctors cannot treat your baby. Their patient was literally inhabiting someone else’s body — they had to treat me, and my body treated my boy. He had no shots, no IVs, no uncomfortable bed rest, no blood draws, no nauseating medicine, no EKGs, etc; I was able to shield him from all the pains and nuisances, take the discomfort for myself, use my body as a buffer to protect my unborn child. Emotionally, I was prepping for an option I was repeatedly reminded of: taking him out and shocking him into sinus rhythm. I could not imagine simply looking on at my baby’s trauma, unable to bear the weight of his suffering. Regardless of my darkest hours of thought, he was still inside my womb, and I could protect him.
I was monitored 24/7 and had a personal nurse at my bedside at all times. My heart was healthy, but I was on medicine intended to reset an arrhythmia. My team was cautious and would not leave me unattended. I had to become creative about my privacy — pass gas as the noisy blood pressure cuff inflated, for instance.
There were moments of laughter, like when my favorite nurse came in with an extra pillow she didn’t think she would find on a busy day, and I blurted out, “Oh yes, thank you!” just as another nurse inserted her fingers for a cervical check. Or when the big clunky monitors on my stomach slipped out as I was half asleep and in my grogginess I thought I had delivered. I was met with smiles and optimism that kept my spirits high through so many unpredicted curveballs during my treatment.
On my sixth day of my second extended hospital stay, and at exactly 35 weeks gestation, little Emilio maintained his sinus rhythm for 12 hours and with one final EKG, fetal echo, and blood draw, I was sent home with a small Doppler and an appointment for a follow-up the next day. I was being transferred from inpatient to outpatient, and my boy was staying where he belonged.
Two days later, we noticed a strange rhythm marked with skips and gallops on our at home Doppler. While at work, I was called to report immediately to my doctor, where his recurring flutter was confirmed yet again; another hospital admittance was in order. Soon thereafter his scans showed that his heart enlargement and his tricuspid valve leak was growing stronger. As the lead pediatric cardiologist informed me that they would be transferring me to a hospital downtown attached to a children’s hospital that was equipped to “handle a case” like mine, my mind drifted to what I had imagined a month earlier as I wrote my birth wish list.
I envisioned laboring at home in our beautiful new bathtub with lavender-vanilla bubbles and candles, and bath pillows. I thought about going to the hospital late in active labor and delivering naturally with no medications, a supportive team, and my baby being passed straight to me to bond and feed. I thought about spending hours staring at him under dim lights with soft voices. I imagined feeling excited, happy, in pain and in love.
Those images came crashing to a close as reality set in; my stomach would be cut and my boy would be taken straight from me for a quick, immediate evaluation under bright fluorescent lights. They would shock him, start his IV, and whisk him away for further care and tests, possibly even inserting wires into his heart to burn extra connective tissue. I would not know how long it would be until I could be with him, but rest assured, he would be treated by the best of the best. A lactation consultant would help us learn to feed when he was ready for the transition off a probable feeding tube and a less probable, but possible, intubation.
The calm, lavender-scented expectations of my son’s birth turned to fantasy.
As I returned to my room awaiting the final paperwork and ambulance for my transfer, the caring nurses and my OB came in to tell me nice things and request that I keep them updated. I was grateful for everyone’s kindness, and somewhat resentful that kindness is not stronger than modern medicine. How I wished that Emilio could be cured with the smiles and love I was receiving instead of medicated IVs and electrical stimulation.
Upon admittance to the downtown hospital, we were bombarded once again with a litany of specialists, each explaining their plan and obtaining consents. Later, a NICU nurse came in and sat down. She explained the possible scenarios immediately after birth, none of which included me holding my baby.
I could feel my face slowly turn tingly and red as I pulled my lips in and quietly wiped away tears. I couldn’t speak; if I released the tension in my face to open my tightly clenched lips and quivering chin I would fall apart completely. I couldn’t look at Daniel, my husband, either as he fought to hold himself together while she explained the difference between the Cardiac Intensive Care Unit at the Children’s hospital and the Neonatal Intensive Care Unit. The nurse, too, was swallowing her words without pause, trying to disguise her empathy with professionalism through her voice shook ever so slightly and the underside of her eyelids welled slowly. As she left, Daniel and I shared our first real cry; I wept.
I would weep again when my body could not tolerate an increased dose of my second medication — at last I felt the toxic side effects and the doctors had to drop my dose back down. My heart had reached its limit before saving my boy.
One Christmas a few years ago, my parents had taken Daniel and me to a casino for what they expected would be a fun outing. Hesitant to even go, I despised every minute of gambling. I felt so out of control, and I didn’t trust my luck. In a few hours, I lost everything I had come with. Now the stakes were higher, and I was forced to gamble once again. Though he might cardiovert naturally, with meds, or with electrical stimulation, Emilio also might need surgery when he is born.
For these interventions, the doctors needed his lungs as developed as possible; they are not comfortable delivering until at least 37 weeks, nine days away from when I was informed that we’d have a 10% chance of losing him during the wait. If he developed hydrops during that time (the main impending risk of his prolonged flutter) the odds of him not making it would jump to 50%.
I have never been a gambler. I have yet to win the gamble of jumping lines at the grocery store, and now we had to take a gamble with my little baby boy’s life: keep him in utero nine more days for healthier lungs, or take him out early. Never was I so acutely aware of how much I could love someone who has yet to be born. Overcome with doubt, fear, and love, we defaulted the decision to the doctors, vulnerable to their gambles and hopeful their luck was better than mine.
We spent that night reading books to Emilio; it was the most tender, hopeful moment we had shared during that tumultuous month. Emilio was kicking with what I imagined as delight in the stories. I longed for the moment to last forever.
We closed our evening with a Mexican nursery rhyme used to comfort little ones who need healing: “Sana, sana, colita de rana, si no sanas hoy, sanaras manana.” (Heal, heal, little frog tail, if you don’t heal today, tomorrow you will.) And he did. The next day, my boy’s heart was in much better condition, though not healed. While still enlarged and with a tricuspid-leak, and A/E fusion, his ventricular rate was around 130. The doctors could not agree if he was in a healthy sinus rhythm or a 2:1 flutter with a lowered atrial rate of about 260 bpm, but either way, we were moving in the right direction.
The lead pediatric cardiologist was thrilled, and even began speaking of going home and having a full-term vaginal delivery. I appreciated her enthusiasm, but was more cautious. We did not know if he was in sinus rhythm yet, and he had been in sinus twice before and only maintained it for two to three days. The waiting game commenced, yet again.
We wouldn’t wait long. Two days later, at 36 weeks and 3 days gestation, our fetal cardiologist informed us that his right ventricular function was deteriorating, and we could not afford to wait until 37 weeks. She looked up from the echo and straight into my eyes said, “We will deliver you today.” Given his condition, the doctor prepared us for him to be “sick,” to go straight to the cardiac intensive care unit in the children’s hospital, and to follow up with neurology once his heart was relieved as there could be developmental delays from his prolonged flutter.
“Flutter” sounds so soft, gentle, and delicate — a hummingbird, a butterfly, little ballerinas in matching tutus. The image of my Emilio’s heart on the screen was nothing of the sorts; it was harsh, jerky, tiring. I hurt to watch the struggle. I was scared of the struggle ahead. “Do not worry yet,” warned my older, no-nonsense but nurturing Nigerian nurse. “I am not saying it is easy, but if you worry now, you will forget all your questions. You need to be strong while the doctors are here and keep your head together. You worry later, you cry later. Right now, you stay smart and strong before the doctors go to help another patient. Make them ready for you. We’ll be praying here.”
Emilio was delivered via C-section, shocked multiple times, taken from me for over eight hours, and hospitalized for over a week before being released outpatient with doctors’ appointments every two days. He had medicine every eight hours for the first two years, a failure to thrive diagnosis, and a week-long re-admittance for breakthrough arrythmias at seven months.
We met many heart mamas whose strength was greater than mine, and we were lucky (is that the word?) to always be the healthiest inpatient baby on the cardiac floor.
Emilio is now five and thriving — and on each birthday, I compensate for the trauma of his birth with elaborate birthday cakes. I’m just so thankful that now, our efforts have shifted from getting him ready for the world, to getting the world ready for him.
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