Black mom on premature birth, racial disparities in maternal health: ‘I carry that with me’
OPINION: The voice of the patient should remain the loudest amongst all the voices of doctors, and loved ones who will never be lacking opinions and unsolicited advice
My son was born at 29 weeks weighing 2 pounds, 14 ounces. He spent his first 54 days of life in an incubator, growing internally, outside of the one place that made him feel safe and warm.
For the last year, I have carried with me the belief that I failed him. He had more needles, monitors, and other gadgets connected to him than I have had in my lifetime. I was told I should not worry about his agony — the intense agony he always looked like he was in — since he would never remember. I carry that with me, too.
The irony is not lost on me. I convinced myself that the safest place for my Black son was in my Black womb. To threaten his life meant that mine would also have to be threatened, and I just knew I had “played” enough in the sandbox of white supremacy and patriarchy to at least protect him for nine months.
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I have spent decades navigating the medical world as an advocate. My mom has sickle cell anemia and I have already buried my father, grandparents and a host of other loved ones. At minimum, protecting my son for nine months from a world that will make it progressively more difficult for me to do so was something I knew I could do.
But racism has a way of intimately reminding me of my inadequacies of fighting such an intricate system.
I was also in pain — unimaginable pain — and was beholden to an institution made up of people who did anything but actually believe my suffering. My body was their guinea pig. I was too weak to fight them. My husband and the rest of my family took turns each shift to advocate on my behalf — we started from the very beginning on every shift. The medical team reminded me of all of the risks of having to take pain medication while pregnant, with an underlying assumption that I was an addict.
They knew of my fibroid that grew as big as 14 centimeters, but thought it best to do additional tests that would further cause discomfort and pain, in order to check my appendix. All the while, they communicated things like, “We believe your pain,” as if they pulled the phrase out of a pre-approved list of phrases to say to Black women to provide comfort and build trust.
When reading through my medical chart, a nurse felt emboldened enough to write in my permanent record that I felt like doctors should go “above and beyond” to care for me. She wrote it in such a way to make it seem like I was being unreasonable. As if they weren’t mandated to do all they could to ease my pain and keep me and my baby alive. As if my request did not align with their stated mission:
The mission of the Mount Sinai Health System is to provide compassionate patient care with seamless coordination and to advance medicine through unrivaled education, research, and outreach in the many diverse communities we serve.
I underestimated how triggering it would be to write this piece. I’ve been trying for over a year, giving myself benchmarks along the way. The first was Jan. 24, my due date, his original birth date, three months after giving birth to him and just two weeks of having him home. The second was my first Mother’s Day — a way in which to commemorate my very special day with the hopes of proactively putting the trauma behind me and creating new memories.
My third was August. It seemed right. There’s a whole week devoted to Black women and breastfeeding. I could use that week to talk about my endless breast pumping sessions, religiously every two hours at home, without my baby, or at the NICU while watching my baby.
I literally pumped milk like his life depended on it, because I thought it did. It was a welcomed distraction. From there, I decided to just wait until his first birthday on Nov. 10 — the pandemic will be over, I will have successfully kept him alive for a year, and it will be an even better way to commemorate his life. It was a mere coincidence that his birthday falls within the month of Premature Baby Awareness month.
In the heart of the pandemic, I got pregnant again and rediscovered what I know of my body, and trusted myself again in spite of the lies the medical field tried to convince me of. I did not give birth at 29 weeks because of a weak cervix and growing fibroids. I gave birth early because of malpractice. Period.
My care for my second pregnancy was ran by a medical practice of all Black women, who put my angst at ease. It was a practice that thought of all of the ways to ensure that I feel safe and taken care of. As I continued to grow baby boy #2, I forced myself to think of the silver lining in my experience with my firstborn. The reality is that he saved both of us by coming early. His arrival proved to be a foreshadowing of who he has become in our family.
Black women are 50 percent more likely to have a premature baby than white women. The games the medical field plays on the bodies of Black women to make us hold the blame is astounding. I know my body better than the most qualified OB-GYN, and their practice of medicine will only be successful with my partnership.
For instance, I was told to wean my now 15-month-old baby off of breastfeeding by the time I got to week 17 of my pregnancy for fear of inducing preterm labor. I was also told that changing my diet would not impact the way in which my fibroids acted this time around.
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However, my baby still breastfeeds and being intentional on avoiding foods that I knew triggered episodes from my first pregnancy resulted in smaller fibroids this time around. I, by no means, am advocating for anyone to not listen to their doctors — especially when you have found a practice that honors who you are and provides the care you deserve.
I am, however, encouraging the voice of the patient to remain the loudest amongst all the voices of doctors, and loved ones who will never be lacking opinions and unsolicited advice.
I wish I could say that I was no longer triggered or scared to give birth again. My reality, however, like all things of significance I have done in my life, is that the fear I experienced lets me know that I was being stretched in the ways necessary for the next stage of my journey.
I will now have two boys under the age of 2 … pray for me.
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