Guest Post By Jacqueline McLeeland
Sickle cell disease (SCD). High-risk pregnancy. Cesarean delivery (C-Section). This was my reality during my pregnancies, which increased my risk for complications. I wouldn’t describe my birth experience as dramatic, but my pregnancy was not without its challenges and concerns. I am here to share my story and highlight the importance of labor support, self-advocacy, and the respect for the quality of care that moms deserve.
I’m Jacqueline McLeeland, proud mom of two healthy boys. As an SCD patient, I was concerned about becoming pregnant, yet I will never forget the joy I felt when I found out I was expecting my first. It felt surreal. I was going to be a mom. But as my pregnancy progressed I realized there was so much I didn’t know about what to expect, motherhood, our health care system, and pregnancy related challenges. The Internet became my closest friend. I am an avid researcher so not surprisingly; I was that mom-to-be who researched EVERYTHING (yep, no shame to admit it, that was me!). But no matter how much information the Internet afforded me, there was so much more it didn’t prepare me for. And no matter how much I read, nothing outweighed the support that came from my tribe: my husband and my parents. Being placed on bedrest around 32 weeks, while necessary, was an added stressor that impacted my career. Another barrier for many moms and families that interferes with truly focusing on their health and the health of their unborn child. You often hear stories about what women go through during pregnancy and even while giving birth. For me, it was everything after.
Despite me having SCD my OB planned for a vaginal birth but made the necessary preparation for a C-section. At 38 weeks I had a successful C-section. Within a few hours my husband and I were informed our little one had newborn jaundice, a common and treatable condition when caught timely enough. For this reason, I had to remain in the hospital while my baby received phototherapy treatment. My husband stayed by my side the entire time, which was so helpful. He attended to our little one while I got much-needed rest. Somewhere between 24-48 hours of giving birth, I began to experience shortness of breath accompanied by pain near my ribcage. I was so ready to get out of the hospital, take my baby home, and
start this new chapter that I almost dismissed my own health. Finally, I told a nurse what I was experiencing who then notified the doctor on call. Concerned with the possibility of a pulmonary embolism (PE), the doctor ordered a CT scan which came back negative. But ultimately, they never could determine what the cause was. After two challenging days of breathing and walking exercises I was released from the hospital on New Year’s Day. My postpartum instructions came with an incentive spirometer, a breathing device that helps prevent congestion in the lungs, to continue my breathing exercises at home. A lot happens within that first year. Before we knew it, we were at year 2 and expecting our second.
I had an amazing high-risk perinatal specialist during my first pregnancy not to mention, she was familiar with my medical history and well informed and experienced in SCD. It made sense to use the same physician the second time around. During my second trimester my doctor fell ill and I was assigned to another perinatal physician within the same group for the remainder of my pregnancy. I was concerned for several reasons, including the fact that not too many physicians are trained and experienced with treating SCD patients, let alone during pregnancy. But I adjusted, somewhat. I figured I was decently prepared for round two. But as my pregnancy progressed, my new physician revealed there was excess amniotic fluid along with a high platelet count which increased my risk for blood clots. I was put on medication for the latter issue while my amniotic fluid remained under observation. I successfully made it to 37 weeks and my C-section was scheduled at 38 weeks. I was a little more nervous this time around. With my husband by my side, I was taken into the operating room and administered regional anesthesia and a conscious sedation.
As I held my husband’s hand, I periodically glanced over at him as he watched the procedure. He doesn’t exactly have a poker face so if something seemed off, I would know immediately. At some point during the C-section I felt a force that vibrated through my body and left me breathless. I was scared, even more so as the doctor remained silent. I looked over at my husband and his expression was not comforting. I squeezed his hand while struggling to breath and was able to whisper, “what just happened?!” The moments that follow is a blur, but I remember slowly regaining control of my breath as the nurse held my baby boy for me to get a glimpse before attending to his preliminary care. I had survived another C-section. Blessed with another healthy baby boy. During my first pregnancy, my doctor and her team talked us through every step during the C-section. I felt well-informed, included, and respected. This time around, my experience was quite the opposite, but I accepted it—different physician, different style. It was only after the delivery that my husband shared with me what he observed during that “breathtaking” moment (pun intended). As would become clear later, communication was not a strong point with this physician.
I experienced the “baby blues” this time around—crying spells and irritability were my primary symptoms. Although this lasted for only two weeks, I remember being reluctant to admit what I was experiencing due to fear of being judged or someone questioning my ability to care for my family. But my husband and parents recognized it and provided the patience, support, and love that I needed.
What I want women, partners, families, advocates, and providers to take away from my experience:
The current climate of our health system is not always supportive of expectant mothers, which makes labor and pregnancy support that much more vital for women. My professional background helped to shape my ability to find reputable sources, access the information pertinent to my situation, ask the right questions, and seek guidance when health information was unclear to me. I was also fortunate to have a strong support system through my husband and parents, and my physician during my first pregnancy. Not everyone has this.
I want mothers to know they must believe in themselves, their ability to speak their voices, and to listen to their bodies and intuition. If something feels off, do not ignore it. Your health and well-being are just as important as your baby’s.
Effective communication can help moms and families feel less stressed during childbirth, even when there is cause for concern, effective communication can provide a level of comfort. A key factor to building patient-physician trust is keeping the patient informed in the matters of their own health. Likewise, and to reiterate self-advocacy, women should have a supportive partnership with their physician/medical team.
Every woman deserves dignity and respect in her medical treatment, especially during such a vulnerable time like pregnancy and childbirth. She should be included in any medical activities related to her health prior to initiating those activities, or immediately following an unplanned medical emergency/procedure. Point in case, almost a year following the birth of my second son, I received an unexplained medical bill. After further investigation a verbal breakdown of the bill was provided to me. Apparently, it was documented in my medical files that the doctor had to remove a pedunculated fibroid during my C-section. I was never informed of any fibroid issues before, during, or after any of my pregnancies. Several months postpartum and this was the first time my husband and I were informed of any such procedure during my C-section. No mom should have to learn of an unplanned procedure during childbirth through a medical bill received almost a year following delivery.
Jacqueline McLeeland resides in the Houston, TX area with her husband and two boys ages 5 and 2. She is the Founder and Managing Director for KenKor 360, an ethics and compliance advisory firm for community-based organizations. Recognizing the need for maternal health advocacy, Jacqueline has gone on to establish Push Birth Partners (DBA, Push), a maternal health navigation service for women and expectant mothers. Push is scheduled to launch May 2020. She hopes to use her voice, mommy journey, and life experience to help mothers access the resources and labor support that fits their needs for a healthier birth experience.