Why Autonomy is Vital
As I sat on the formed plastic chairs in the exam room, a flurry of thoughts swirled through my head. I spent a week searching at every opportunity for what Neutropenia meant for childbirth. For pregnancy. I was 23 and grieving the possibility of stillbirth in a baby I hadn’t conceived yet.
The doctor came through the doorway in a loud bustle of hello’s and sorry for your wait. She asked simple questions and remarked as always that I was doing well despite not having an immune system. I moved to the exam table and let her uncomfortably dig around in my armpits for lymph nodes that are never enlarged. Dig under my collarbones. Palpate my spleen. Heart, lungs.
I spoke my mind. I married a few months before and we looked at the research revolving around Neutropenia. One study… ever. 30% chance of stillbirth. 70% chance of miscarriage. Blood clots, meningitis, umbilical infections, septicemia. Those odds would only go up in a couple of years when I turned 25, as they do for all women. I hadn’t planned to have a child for five more years. But if in five more years my chances of conceiving were negligent, we were going to try soon.
”You’re young, let’s not talk about that right now.”
That’s… what? That’s not your choice.
”I’m just looking for counseling on what I need to consider. This study talks of being on Neupogen to lessen risks and help success for conception. Is Neupogen an option for me?”
“I just think you’re too young to be planning a baby.”
It’s not your decision.
I went home. I cried a bit. I felt like I was being told I wasn’t good enough for motherhood. I felt this window was slipping and years of hardship and emotional turmoil were looming just on the edge of my peripheral foresight. We made the decision to move forward and try for a baby.
My hematologist ignored my calls for months. She had my appointments rescheduled six and nine months out despite needing to be seen for pregnancy management. I would call and be told on return that she was out of the country. The perinatologist was just at a complete loss as to why they wouldn’t see me. He called himself and demanded an appointment for me. She still refused to see me. He demanded I see another physician. They told him no. We formally petitioned for a change in physicians and cited misconduct of two previous doctors I saw. Again, I felt unheard and that an entire practice was expecting me to fail, expecting for us to have a demise any day. We were talking about starting daily injections of Lovenox, daily injections of Neupogen, a bone marrow biopsy 28 weeks pregnant. All the while I had stable health, a 99th percentile baby and an otherwise healthy looking pregnancy.
I was overwhelmed by what little input I had over my own health, over the care my baby would receive. Everything felt like… falling slowly in a dream and reaching for a lifeline that was just a hair’s breadth out of reach. And I watched my hand grasp and fail over the span of a thousand moments. Perpetually falling.
I reflect on my pregnancies often in this changing birth culture. I think of how much resentment I carried for my back to back to back pregnancy, the burden of caring for so many children and more than one with complex health issues. I resented how it affected my marriage. How my births did not unfold the way I wanted them to. I resented so much of the gifts I never anticipated I could have. I grappled with postpartum depression and perinatal mood disorder. I was at war with my psychological and emotional self for a time span of five years and more than once felt like I was in a losing battle against suicidal ideation and plans.
I reflect on how despite all of that… how much worse it would have been if we had waited. How much humanity I would have lost in the birth of my children should any of them had been born in a COVID world. My births would have been a wall of yellow gowns and respirators and obscured faces. My baby would have been seen as a product of society, not an extension of myself. We would have been quantified into purely data, protocols, medications, isolation, calculated risk, progress. My births would have been separation from my babies to protect them. To protect them from me, the vessel that could have at any time been their death already. My births would have been jabbing my babies with needles and swabs and unnecessary exams because I am a risk. We would have continually searched for a problem. How could I create a perfect human? I am immunodeficient. And to what end would we search? To discharge my baby back into my waiting arms two days later and go home to a bubble of space where everything is as it was as long as I don’t hop on social media and see the rising positivity rates? Home, where no medical professional follows up, asks how you are adjusting, counsels you on your pain or your birth trauma or your inability to connect with your tiny baby that you know you love but you don’t feel that love yet.
If you’re struggling with your loss of autonomy in COVID pregnancy or birth experience, reach out to me. I want to talk about it with you and help you find some small piece of healing in a world in throws of chaos.