Fast forward to yesterday. In the span of a few hours, my otherwise healthy baby became a possible case of a Zika-infected microcephalic fetus. Zika blood work following our holiday trip to Mexico came back inconclusive (actually, it came back “equivocal,” which means neither positive, negative, nor inconclusive. Helpful, eh?). That, coupled with the fact that I’m carrying a petite baby, and all of a sudden my latest doctor (who I’d never met before) wants me to see another group of specialists to rule out microcephaly.
It’s not that I don’t appreciate the concern conveyed throughout this pregnancy. Carrying a baby is undoubtably one of the riskiest experiences a woman might have her in life and I do want to feel well taken care of by my physicians. But, it’s the lack of bedside compassion and the total disregard for common sense that seems to be sweeping parts of the medical community that has me going out of my mind. In one moment I’m hearing the doctor is concerned about gestational diabetes, which can lead to large babies, and in the next, he’s equally concerned my baby is too small. Now, this little girl has already been poked, prodded, and viewed from the inside out, thanks to technology such as the fetal MRI. Each part of her developing brain has already been examined by a top specialist and confirmed normal. So, this latest round of fear-inducing possibilities seems, well, extreme.
Common sense tells me it’s highly unlikely that I contracted Zika on a 5-day vacation to Cancun, in which my other 20 family members who traveled with me, did not. Common sense tells me it’s even more unlikely that I contracted Zika, passed it on to my fetus, and made it to nearly 30 weeks of pregnancy before anyone noticed she had microcephaly. It’s not impossible, of course, just highly unlikely. And if that is what’s going on, well, holy hell, that’s terrifying.
But the professional voice delivering this concern could not have been less worried about infusing more terror into the situation. He was brusque, dismissive of my questions, and completely unable to accept the possibility that all this testing might be more harmful than helpful. Even if the worst case scenario turns out to be a reality here, what practically can we do about it now? No test result at this point negates the fact that this baby is well on her way to arriving. And the best things I can be doing for her are eating healthy, exercising regularly, sleeping plenty, and remaining unstressed. A little comfort or care by this doc would have gone a long way in helping with the stress part.
During the six years my father was seriously ill, I experienced a few moments in which I sat baffled in the hospital, wondering where on earth common sense had disappeared to. To keep my dad alive, doctors performed endless interventions, each one robbing him of some degree of quality of life as a result. Two months before he died I asked his medical team point blank what the longterm goal was. We had lost sight of any goal beyond just keeping him alive another few days or weeks. I was again met with total dismissiveness.
“What do you mean?” the doctor asked. “This man is perfectly healthy. Aren’t you, Mr. Sullivan? Won’t you work hard to get back on your feet?”
I looked down at my dad’s bed at his increasingly skeletal frame, his body which hadn’t stood upright in more than four months and which would likely never walk again. I watched him nod in confirmation, knowing he hadn’t understood the question, couldn’t accurately orient himself to space and time, and that his beautiful, genius brain was never coming back to us. I looked over at my mother, who was beaten down, mentally and physically taxed from six years of caregiving, including one in which she was fighting cancer and receiving heavy, toxic doses of chemotherapy, and here is what I saw: there was no sense in it anymore. We were following standard medical procedures in which one doctor is responsible for one thing and another is responsible for something different and zero of the 12 people in the room had been tasked with looking at my father as a whole human. And we had all just completely lost sight of what we were hoping to accomplish.
A few weeks later, my mom and sister and I made the decision to give my dad his dignity back and let him die on his own terms: at home, in his bed, looking out over the water he had always loved. Finally, and only in death, it felt as if life made sense again.
Baby Girl’s situation is lightyears different, but yet I find myself in the same role: the overlooked and quickly dismissed patient. My heart tells me that all is well and that I’m growing a healthy baby who will be who she is in this world – neither a tragedy nor an image of impossible perfection. My head reminds me of a piece of advice I often give to TBI families at the end of my speeches: Let your joy speak louder than your fear. And in this moment, my joy wants nothing more than to savor and enjoy each remaining day of this pregnancy, a gift I’m so grateful to receive twice in this lifetime. Nine months can feel like an eternity when you’re pregnant, but nearly losing TC has taught me better. This experience is only a blip of a lifetime – a nanosecond in which all of your energies are consumed by joyful anticipation as you await a miracle of your own making. It’s an enormous risk, but it’s also a gift, and I’m reluctant to let this latest wave of concern steal my joy a second time around.
If my doctor refuses to participate in the sharing of hope, then I hope he’ll enlighten himself with some common sense. But I truly believe a good physician can do it all: compassionately share concern, instill hope, and consider a holistic perspective. I give credit to the many incredible doctors who have already found this balance in their practice.
So, I write this post not to further dramatize a situation that’s already achieved eye rolling dramatic status, nor to ask for prayers. I am confident that all is well and I look forward to sharing an update. Instead, I wanted to take an opportunity to reflect on an experience that’s becoming increasingly common and troubling for those who seek medical care. It’s a reminder to us all to honor ourselves as the experts on our own bodies and to resist the urge to swell with anxiety every time we learn of something outside of what is acceptably “normal.”
Let joy speak louder than fear always, always, always. And don’t forget to use your head. Common sense is a rare and valuable quality these days.
Wouldn’t you know, all is well that ends well? Today’s specialist confirmed baby girl is 100% healthy, just petite like her mama! The Zika tests had been misinterpreted by my OB and they too are negative (confirmed by the Center for Disease Control). While it’s been a headache and certainly an unnecessary medical adventure that our insurance will no doubt be thanking us for later, it’s also been a good learning experience. My hope is that the next mama Googling cysts or Zika (just like I was), might stumble here and find some solace in knowing that things generally do turn out OK. And at the end of the day, you have to advocate for yourself, especially in situations where you find yourself shrinking next to the overbearing professional.
Thank you for all the love and wisdom, friends. Let’s call this a wrap on the prenatal drama and return to that all that good stuff in life that deserves our attention.