Tiny Warrior: A Mother's Resilience in Her Son’s Neonatal ICU Journey
Have you ever heard of a “Wimpy White Boy”?
I love to remember one precious baby boy patient of mine, Luke. He was born into my care eighteen years ago. His mother came into L&D with premature rupture of membranes, without any fever. She was given antibiotics and steroids to mature her baby’s lungs. Despite being given other meds to stop her premature labor, it continued in earnest. Within eight hours her son was born weighing two pounds at 27 weeks gestation. He was thirteen weeks early!
After giving this new mom a quick peek at her baby, we dried him off, intubated him, and admitted Luke to the NICU. There he was placed on a ventilator and given artificial surfactant. His response was not optimal, and his chest x-rays showed pneumonia and severe respiratory distress syndrome. He responded slowly to treatment. We witnessed minimal improvement with lowering of oxygen requirements and ventilator settings in the first few weeks.
A challenging NICU course
Then he developed a patent ductus arteriosus (PDA), a congenital heart defect that flooded his lungs with too much blood. Medical therapy to close his ductus was not successful, which was discouraging for his parents. Later his PDA required surgical closure, which created another setback onto higher oxygen and ventilator settings, and more disappointment for his parents. Afterwards, this little guy developed a central venous line infection which required intravenous antibiotics and was treated successfully.
In addition to visiting Luke every day in the NICU, his mother pumped/expressed her breastmilk for us to feed him. Luckily, he tolerated his mother’s breastmilk feedings very well, but his growth was slow. She loved doing something for him that none of us could do.
Luke’s mom was a NICU mom extraordinaire. She was brave, calm, and thoughtful. She got to know her son’s nurses and seemed to feel adequately informed (by them and by me). If she was scared throughout his NICU stay, she seldom revealed that to me. Some NICU moms are traumatized by the experience and rarely visit because the ICU environment is so overwhelming. Others develop postpartum depression. Others hide their fear and remain dutifully present at their child’s bedside. Many NICU mothers feel guilty, as if they did something that caused their child’s preterm birth, but this is almost never the case!
NICU Challenges and Slow Recovery
Little Luke had other complications – a small hemorrhage into his brain and another bout of infection. His progress coming off the ventilator was agonizingly slow. He was one of a group of patients that NICU nurses call “wimpy white boys.” He developed what is called chronic lung disease, or bronchopulmonary dysplasia. Many medicines were used to help wean him off the ventilator, but ultimately, he needed intravenous steroids to hasten his recovery.
However, steroid treatment was not without risks. At that time, we were concerned that babies who required steroids might be at an increased risk of cerebral palsy. His parents and I were willing to take that risk to get him off the ventilator. Fortunately, the steroid treatment worked, and we were able to wean him off his ventilatory support quickly, However, he required supplemental oxygen by nasal cannula for many weeks.
This tough little guy remained in the NICU for over six months. His first few months we spent keeping him alive and weaning him off the ventilator. His next few months were spent getting him to grow adequately, learning to feed, and weaning him off his supplemental oxygen.
“Wimpy white boy” refers to the degree of severity of respiratory distress syndrome that white premature baby boys predictably demonstrate. Luke’s course was typical – severe, chronic, and complicated. The term is not used as racial prejudice, but rather denotes a demonstrated racial and gender difference in disease severity and mortality. (African American premature baby girls fare the best.) The NICU nurses used “wimpy white boy” as a term of endearment, however it also referred to the very slow progress that these baby boys made in learning to oral feed, something that they failed to master until well after their due date.
Not surprisingly, it took quite some time for Luke to learn how to oral feed, both sucking from a bottle and nursing at the breast. Can you imagine expressing your breast milk for over four months before you ever get to nurse your baby?
Eventually, my little patient slowly accomplished everything he needed to do to go home - three months after his due date. His mother was there at his side every day throughout all his trials and setbacks. She and his primary nurse became close friends through all his ordeals. After Luke went home from the hospital, his mom kept in touch with this nurse, who would relay to me how he was doing. I delighted in hearing her good news about Luke.
Fast forward eighteen years to Luke’s high school graduation this past May. His primary nurse shared with me his senior picture and the graduation announcement his mom sent her. Luke had grown into a handsome and fit-appearing young man. Having become proficient on the guitar, he planned to begin music school in Colorado. Hearing that update filled my heart with such joy. To see such amazing progress in this child, now a young man, made my heart so full.
Then, one day later this past summer I was in Nordstrom shopping for jeans. I was at the counter checking out, and this lovely middle-aged woman came up behind me, tapped me on the shoulder, and asked, “Are you Dr. Landers?” I turned around and said, “Yes,” however I did not recognize her at first. She revealed that she was Luke’s mom, and I squealed and gave her a big hug. When I asked about Luke, she told me all about his high school years, his music, and the college he planned to attend. I could easily see how proud and happy she was, and again I felt tremendous joy.
As I reached for my credit card, she blurted out to the sales lady, “This doctor saved my son’s life!” My heart almost burst with pride, love, and gratitude. It was one of those moments that I will never forget. Luke’s mom allowed me to feel truly worthwhile and marvelously fulfilled when all I had done was my job.
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