It had been close to 6 months since my rainbow baby was born when I finally got the courage to request my medical records from her birth. I was looking for the objective, a chance to dig into one of the biggest moments of my life that I never got to experience. Fortunately, sifting through those pages got me exactly what I needed – a timeline of my daughter’s birthday from the beginning to the end.
I was a day shy of 20 weeks when I delivered Leo, tiny, growth-restricted, and perfect, in June of 2019. The pain left me alternately numb, hopeless, and in the kind of emotional pain that makes your teeth hurt. It took 12 weeks for the official closure to come in. “Antiphospholipid syndrome” was not a good diagnosis, and I knew it.
When we found out that Evie would be coming into our lives, I felt like I needed to put on a suit of armor and prepare for the biggest fight of my life.
Me and this baby versus my blood. Us versus the placenta. Us versus COVID-19. Two weeks after that positive pregnancy test, the pandemic brought the world to a halt, and so I retreated to the safety of my home, fearfully hoping to ride out the worst of the storm.
The weeks came and went, my stomach always knotted up in fear every single day while I waited for the other shoe to drop. I really could not envision a positive outcome, even though my treatment plan was promising. I spent the moments I wasn’t working or walking reading every study I could find about APS pregnancies, blood thinners, and significant risks such as preeclampsia and placental insufficiency. My maternal-fetal medicine care team did a wonderful job. The opportunities for reassurance and care were ever-flowing, and I didn’t see any reduction in my care due to pandemic restrictions.
As the summer came, and we finally survived the anatomy scan and Leo’s loss date that terrified me so much, I began to feel flutters of hope. The fear didn’t lessen, but having a sense of true hope was enough to propel me further into the second half of pregnancy.
At 26 weeks, I had our second serial growth scan. I took my glucose challenge drink and headed to the room furthest in the back on weak knees. The sonographer showed me her heartbeat, then clicked furiously, taking measurements, and was mostly quiet. I watched the estimates flash on the screen. Something was wrong. Did I just see “23+4?” It wasn’t right, but more estimates looked wrong. My stomach dropped and suddenly, I was overcome with the sensation of cotton balls in my ears, cold clammy air, the room spinning. I threw up. The nurses tittered at the poor girl who couldn’t keep the glucose drink down. I didn’t say it, but it wasn’t about that. Seeing those measurements was like watching the first stage of Leo’s death. And now my daughter was in danger of the same monster that took her brother from me. The medical student and fellow I met were honest. “Your daughter is showing signs of becoming growth restricted.” And so I sobbed because history was repeating itself.
From that point, they monitored us twice per week. She grew, but slowly, slipping off the curve a little more each time.
I attended a non-stress test (NST) on Friday, September 11th. While Evie passed with flying colors, one of the nurses mentioned that my blood pressure, while not officially high, was significantly above my normal baseline, and repeated measurements were in the 130s over 80s. I felt uneasy. My head hurt mildly, but we decided to push through the weekend and they asked me to monitor myself at home.
I don’t remember much from that weekend. I know I was scared. I remember that on Sunday, September 13th, I felt very sick, even though my blood pressure measurements were still technically “normal.”
On September 14th, at 30 weeks and 6 days, I asked my husband to drive to the NST. I didn’t feel right. I knew immediately that something was wrong when the BP machine let out an ominous warning beep after taking my pressures. Again and again, all abnormal and one in the “severe” range. My doctor took one look and sent us to L&D. Triage was the first time my husband got to hear her heartbeat, beautiful and loud like a galloping horse. Medication was given, and I remember my husband put a chocolate cookie in my mouth. Everything else in my memory is lost to the dysfunction that took hold of my brain.
According to my medical records, the seizures began at 5:14 pm and were resistant to magnesium and were followed by periods of agitation and aggressiveness.
I had developed eclampsia, a rare and severe complication of preeclampsia. I learned from the records that I had a brief moment of sentience in the OR that I don’t remember. After a series of decelerations, my daughter was born via cesarean section under general anesthesia at 6:17 pm, weighing 2lbs and 6oz.
When I woke up a ventilator was breathing for me in my chest. I heard a voice in the dark saying “Allie, you’re okay. Evie is okay. You had seizures and you had a c-section.” Because I was breathing on the machine, I had the sensation that I couldn’t breathe at all, and I ripped and pulled at the tube, trying to get it out. The rest comes in bits and pieces, as I began to get more control of my body back and my mind slowly came back to me.
When they wheeled me out of the ICU about 36 hours after her birth, I got to meet Evie in the NICU. She was tiny, and thin, with long feet. The CPAP machine covered much of her face and the blue bili lights in her incubator made her look like she was in a little space shuttle. My first thought was how brave she was. Barreling into the world nine weeks early, leaving the only home she’d ever known before she was even ready.
The next few months were the chaos of pumping, spending days in the NICU, and processing.
There was a lot of processing to do. I spent weeks poking and prodding family for details of the full days I missed, as well as the weekend prior where my memory is incomplete. At one point, it hit me that despite all the reading I did, from millions of journal articles to rainbow birth stories, that I could never have predicted this type of birth.
It does bother me that I missed it. During the early days, I struggled silently with the irrational fear that the hospital had swapped her out after birth. But my daughter is healthy and safe. While I may have missed my rainbow’s birth, I remind myself that I don’t have to miss her babyhood like I did Leo’s, and that’s all that I could ever truly ask for.