Happy Prematurity Awareness Day from Huddle Up Moms!
Hello Huddle Up Moms! We hope you are having a good end of the year. Instead of our normal blog we thought we would shake things up a bit. Our hope was to show reverence to this important world awareness day by sharing this beautiful story written by Robyn Goodrich, a local medical student passionate about allowing patients to be heard through storytelling. This beautiful piece was written after interviewing local mom, Whitney Bell about her experience in the NICU.
DISCLOSURE: This information is not meant to be ALL encompassing and should NOT replace seeking advice from your health care provider for specific questions, solutions, and concerns about your health! The purpose of this blog is to spark curiosity and gain some insight into your health.
Whitney was born and raised in Greenbrier County, West Virginia. It was there that she and her husband first met—two awkward teenagers on the school bus. The pair had a brief high school romance, which ultimately ended in several years apart. “We were supposed to go to prom together, but he just quit talking to me,” she smiles. “In three years, we only had two awkward ‘hey's’ in passing at Walmart.” During college, the couple rekindled their high school romance and began dating seriously. When Whitney was 23 years old, she discovered that they were expecting a child together.
“We were initially very nervous, and scared,” she remembers, “because we had said we weren’t going to have any kids until we were twenty-five.” Her gaze falls upon her now two-year-old daughter sitting happily on the floor nearby as she laughs and says, “well, things didn’t exactly work out that way. We just had to become parents sooner than we had expected.”
Whitney’s experience with her first pregnancy wasn’t without its struggles. Initially, she describes dealing with heartburn and indigestion. When she was 14 weeks pregnant, she began experiencing severe cramping and was diagnosed with pregnancy induced cholecystitis, which was thought to be contributing to her other symptoms. After being prescribed a heartburn medication, she reports that her pregnancy progressed relatively smoothly. She had every reason to believe that her baby’s delivery would follow this same, uneventful course.
Around 28 weeks into her pregnancy, Whitney became suddenly ill with what she thought was food poisoning. For several days, she struggled to keep any food or liquids down, and felt her cholecystitis pain return with a vengeance. She began to worry this was something more than food poisoning, and spoke with her doctor who advised her to go to the emergency room for evaluation. There, she was brought to the labor and delivery floor. “They have me go through all of the steps of peeing in the cup, the drugs tests, bloodwork, blood pressure…” she trails off. Her blood pressure upon arrival was 181/93. She was severely dehydrated and was spilling protein into her urine. “At this point I’m by myself at the hospital and I’m scared to death…my mom is 2 hours away and my husband is at work 3 hours away. I’m just all alone.” By the time her mother had arrived at her daughter’s bedside, Whitney’s doctor had returned to tell her that she had preeclampsia. “I had absolutely no idea what was going on. They just told me they were going to monitor me.”
"We just had to become parents sooner than we expected..."
Whitney describes the next 24 hours as a blur of conversations with different specialists, close monitoring of labs and platelets, and a constant rollercoaster of emotions. Her husband arrived. He watched the monitors faithfully tracking contractions and heartbeats while Whitney slept. She was given steroid shots and magnesium sulfate drips that felt as if they lit her body on fire. Groups of doctors swept in and out of their hospital room. The couple was told that Whitney had gestational hypertension, that there was a chance she would be able to carry the pregnancy to 32 weeks, and that she would be going home. Their hearts swelled with hope. Hours later, the doctors were back, sharing the news that Whitney’s condition had taken a dangerous turn, that she would need an emergency C-section, and that she would be having this baby now.
Whitney was taken to the OR at 1:00 am. At 2:07, amongst the cold sterility of blue drapes and fluorescent lights, she became a mother. Whitney remembers hearing her daughter’s cry for the first time as she was delivered, a welcome sign that maybe, just maybe, she was going to be alright. At just 28 weeks and 3 days old she was inexplicably tiny and fragile, her body not yet ready to function on its own. Whitney had only just begun to wrap her head around what all of this meant. Her body was reeling in the wake of major surgery, not to mention the postpartum hormones surging through her bloodstream. Still, she did not have the luxury of feeling these things, not really. Every ounce of strength and focus she had left was diverted into the fight for her tiny daughter’s life. Her narrative shifts away from her own experience and centers itself around her new daughter—Baby E.
Baby E was put on bubble CPAP immediately after she was born. She received surfactant to help her lungs mature. Even still, she required intubation at 12 days old because her lungs continued to be so fragile. She had Patent Ductus Arteriosus (PDA). She was diagnosed with Necrotizing Enterocolitis (NEC). The list goes on, as it does for many preemies. Whitney lists these life-threatening conditions in a steady, measured tone, stripping these moments of their emotional power, reducing them to a sequence of events she has likely re-lived over and over.
Of all the challenges that Baby E faced in the NICU, Whitney dwells most on her struggle with necrotizing enterocolitis. She and her husband spent all night at the hospital following the diagnosis, and rushed home that morning to shower and try to get a few moments of precious sleep. “We had just laid down to sleep when our doctor called and told us ‘I just have a feeling we need to take her to surgery now.’” Whitney and her husband didn’t make it back to the hospital in time to see their daughter before surgery began. Their doctor turned Baby E’s NICU pod into an operating room and did the surgery there because her condition had become so critical. The surgery went “as well as it could have,” but following the surgery Baby E’s condition continued to plummet. Whitney’s face shadows as she forges on with the story, her brave exterior cracking to expose the vulnerability and hopelessness I can only imagine filled her heart during this time. “We thought we were going to lose her that next day,” her voice wavers, only for a moment. “She was put on epi (epinephrine), and most NICU babies don’t come off epi once they’re put on it.” Baby E’s kidneys began to fail, and her little body swelled with fluid. She went from 1 lb 15 oz to a 5 lb baby in a matter of hours.
“That night was really rough, I honestly don’t remember much from it at all,” Whitney carries on, her eyes looking past me into some deep, hidden, terrifying memory. Of all the nights in the NICU, this was the night she and her family were most vividly confronted by death. Death of a child who had barely even lived. She and her family spoke with a palliative care specialist about Baby E’s future that night. Though she does not recall much that occurred during the conversation, she says her mother tells her about a moment when Whitney turned to her and said simply, “It’s in God’s hands now, there’s nothing more I can do.” She leaned heavily on her faith and spirituality during the darker times. She tells me about the many times she and her husband prayed together in the NICU, sometimes joined by members of their healthcare team. “Baby E is called the ‘miracle baby’ at our church,” she tells me, “because truly it is a miracle she is with us.”
Against all odds, Baby E’s condition began to stabilize. Days went on marked by slow improvements. Baby E’s mucus fistula and ostomy were reversed, her PDA was closed. Whitney could finally hold her baby in her arms. Baby E continued to amaze doctors with her resilience and constant strides towards improvement. Whitney and her family were at Baby E’s side from 6 AM to 6 PM every single day. “There was only 1 day that I did not go to the NICU while she was there, and that was because I was sick and had to go to the doctor,” Whitney says with firm pride. This, she believes, played the biggest factor in Baby E’s healing.
Then began the discussion of going home. Whitney explains that throughout Baby E’s course, doctors had continued to tell her and her family that there was no way they would leave the NICU by her original due date. She was simply too sick. Baby E was born on November 9th, and her due date was January 29th. “Well,” says Whitney triumphantly, “we went home on our due date.” Baby E was on oxygen from January until May, and required a heart monitor during that time as well. Then suddenly, even these were no longer needed. She found herself the mother of a healthy baby girl.
When asked to reflect on this time in her life, it is difficult for Whitney to explain how she was able to physically and mentally cope with the demands each new day presented to her. “I truthfully don’t know how I got myself through it. I guess my body put itself in survival mode. I basically didn’t let myself feel anything until I knew she was going to be ok.” It wasn’t until Baby E had completely come off her oxygen and various monitors that she began to experience the overwhelming weight of all that she had endured, falling into a period of postpartum depression. “Suddenly, I had what everyone else considers a normal baby. No monitors, no cords, nothing. So that’s when everything really hit me.” Whitney also credits her family, her faith, and the NICU nurses that helped her along the way as major sources of support during that time. Now, she serves on the parent advisory board for the NICU. She also works with a peer-to-peer program for the NICU and helps to counsel current NICU parents about how to navigate the journey so that it doesn’t feel so isolating and overwhelming. Whitney is also 33 weeks pregnant with her second daughter, whom baby E has taken to calling “gecko.”
Ultimately, Whitney’s story is a testament to the real, raw power of a mother’s love. Everything about her—from the unwavering sense of grounding with which she carries herself to the gentle interactions she shares with Baby E throughout our conversation—are quiet reflections of the harrowing journey she has taken to become somebody’s mother. When asked what motherhood means to her, Whitney’s face softens and she says without a moment of hesitation, “You have love when you have a husband, but it’s not like when you have a kid.” Her gaze falls to Baby E, now a vibrant and healthy 2-year-old blissfully toddling around the room we sit in. “Motherhood is amazing. Nothing compares.” And despite the journey she has taken to be here, the blinding pain and overwhelming fear she has described to me, I see in Whitney’s eyes that these words come straight from her soul.
This story is written by Robyn Goodrich, a 3rd year medical student at Virginia Tech Carilion who is from North Carolina. Robyn is a compassionate student dedicated to sharing patient stories and advocating for women’s health.
Thank you for reading this story, a narrative medicine piece featuring Whitney Bell Mom of two adorable girls, a 28 week preemie that just turned 3 and a 37 week baby that is 9 months.