I thought I might encounter something extraordinary in the exam room that summer morning, but I wasn’t prepared for what found.
Opening the door my eyes immediately focused on the mom — obese and disheveled, maybe 30 years old, sitting on a chair, her eyes peering at some point in her lap. Her infant son crawled around on the floor, clothed only in a disposable diaper that seemed to hang in the crotch like it had needed changing hours before. Mucus teemed from his nostrils. His palms and soles were darkened with dirt. He played by himself, apparently content in his own infant world, while mom existed in her own parallel universe.
She didn’t immediately notice me, and the seconds it took for her gaze to slowly turn to me made me uneasy. When our eyes met, her head shook ever-so-slightly from left to right.
“I’m Doctor Chris,” I said as I held out my hand. “It’s nice to meet you.” Mom took my hand. I felt her rough palms and couldn’t help but notice her odor. She stammered a little before gaining control of her speech. “I like you,” she said. “I like you hair. What’s you name?”
The boy was 9 months old and had come for a routine check-up. One look at his file, just prior to the visit, told me that there was at least one important medical issue I’d need to address. As I did for all routine exams, I plotted his growth (weight, height and head circumference) before making the face-to-face. At my initial visit with the boy, his weight plotted at the fifth percentile, meaning 95 percent of all infants of the same age weighed more. Even more alarming, he had quickly moved from consistent tracking close to the 50th percentile for weight from birth to 4 months to the lowest percentile curve on the graph.
Within seconds of entering the exam room, I had a good theory as to the causes of the boy’s poor growth: inadequate caloric intake with poverty as a subtext. I also wondered about his mother’s ability to properly care for her infant boy, which stemmed from cognitive issues that I could tell were significant. With time I would come to understand and appreciate the simple and complex factors contributing to this infant’s growth failure. He earned a formal failure-to-thrive (FTT) diagnosis within striking distance of his 1st birthday.
The diagnosis
FTT is the medical diagnosis for children who fail to meet standards for appropriate weight gain. Normal growth is necessary for optimal health and normal childhood development. That’s why it’s important for physicians to follow growth closely. Children with FTT and other forms of malnutrition are at risk for developmental delays that may dovetail into behavioral and learning issues during the school-age years. They also are at risk for frequent and prolonged illness.
Psychosocial reasons account for approximately half of FTT cases, while close to 25 percent have a medical origin (a disease process like asthma, malabsorption, congenital heart disease or autism). The remaining quarter of cases are a mixture of the two.
I had studied FTT superficially on a few cases during my pediatric residency training, but I was unprepared for the frequency and social complexity of this problem in the urban community I served as a National Health Service Corps scholar.
The clinic
The National Health Service Corps (NHSC) is a federal program created in the early 1970s to place healthcare professionals (physicians, physician assistants, nurses, etc.) in underserved areas. Since the corps’ inception, more than 27,000 health professionals have served its ranks, with more than 4,000 professionals serving currently. The NHSC compensates its physicians financially by underwriting educational benefits. I committed to the NHSC because of a calling to serve. The tuition reimbursement was gravy.
The clinic where I worked for four years as a newly minted pediatrician was located in a midsize U.S. city and was one of the tougher assignments. As a federally qualified Community Health Center, it delivered primary medical, dental and mental-health services to a medically underserved area of about 70,000 people, 72 percent of whom lived below the federal poverty level. It offered programs in family medicine, OB/GYN, internal medicine, pediatrics and oral health care.
The clinic’s operating budget stemmed from both grants and revenue. On any given year, federal and state grants accounted for between one-fourth to one-third of the organization’s income. It operated in the red for my first three years. State-administered Medicaid comprised upward of 90 percent of my encounters in pediatrics, with both uninsured and commercially insured patients making up the remainder.
At first I thought myself lucky to be assigned to the clinic. But as I gained knowledge of the inner workings of the organization, I began to think of my assignment as more of a curse.
As a result of a dysfunctional organization, the clinic I called home for four years proved to be always entertaining, unquestionably frustrating and mostly absurd — sometimes tragically so. Most in management were in over their heads. Lying, cheating and fighting among employees seemed the norm. Money was wasted. One major gaffe included the disposal of nearly $23,000 worth of state-subsidized vaccinations that had been improperly stored.
Almost weekly the clinic offered new and wacky examples of absurdity and drama, related to both infrastructure and personnel. It took three inspections and almost a year to fix a potentially dangerous heating system. On a couple of oddly similar Friday mornings, both a medical director and a dental director received security escorts from the clinic after detailed cases had been made for their terminations. Both brought forward lawsuits; both received settlements. And there had been a mostly absent CEO who lived out of state and a clinic nurse who never finished a degree but forged a nursing license. An employee sold stolen erectile dysfunction medicine samples, a temp bought a used car with a stolen company check and an employee overdosed on the premises.
Suffice it to say that the inner workings of the clinic were fodder to fill a book. Despite the entertainment value, I — sadly — found the clinic itself to be the most significant barrier to care for the underserved patients it purported to serve. One might say, in fact, that the clinic, too, suffered from a failure to thrive.
The pediatric diseases
This “failure” metaphor didn’t end with the clinic. I often treated patients overwhelmed by diseases of poverty — ailments that severely limited their ability to thrive. I cared for children poisoned by lead as well as those with speech-delay and learning issues and behavior problems. I embraced countless pregnant teens and comforted adolescents fighting depression. I saw asthma and obesity and poor oral health in epidemic proportions. And FTT seemed rampant.
As my tenure drew to a close, I tallied the cases and found I had diagnosed more than 40 children with FTT. I made these diagnoses simply because I followed children’s growth — something that hadn’t been done before I started. In my early days this diagnosis frightened me. I was uncomfortable with the questions, with uncovering the clues, always cognizant of the mother’s fragile psyche. Moreover, I always thought there could be some serious underlying disease or chronic symptom as the root cause. In reality this was rarely true.
With time, my experience with FTT at the clinic supported the importance of psychosocial reasons for the condition. I found that most cases related to poverty, but not in the way one might think: These children with FTT had access to the proper types of calories. Rather, a child’s poor caloric intake stemmed from poor preparedness for parenthood, such unexpected or difficult circumstances as unemployment or homelessness, or parental psychological issues like depression or bipolar disorder.
Even into my final days, the new diagnoses never stopped. There was the case of the bipolar woman who stopped her medicines and that of the woman being beaten by her baby’s father. Both of their infants ultimately thrived when the mother and I confronted the psychosocial cause. There also were many cases of abusive mothers, who were offended at even my most sensitive approach to discussing their infant’s growth. They cursed and complained, then chose another doctor. Finally, there was the time another clinic doctor missed FTT as a clue to an underlying critical heart defect, causing a 6-month-old girl to spiral into heart failure.
And so I saw good and bad and ugly outcomes in failure-to-thrive. Each case helped me to serve the next new diagnosis better. No case taught me as much as that of the rail-thin boy and his mentally disabled mother.
Mom’s challenges
What I gleaned about Mom came from discussions with various caseworkers and many face-to-face interactions. The clinic’s adult doctors provided her healthcare but knew next to nothing about her cognitive deficits and social difficulties.
Though she was in her early 30s, she appeared older than her age — likely related to years of hard living. She was obese and usually exhibited borderline appropriate hygiene, although I had seen her in various states, from completely disheveled to near squeaky-clean. I also witnessed her at many levels of organization — or disorganization. I saw her happy and cherubic, paranoid and angry, despondent and depressed.
She earned a living through part-time work in the fast-food industry. Various assistance programs subsidized her income. She lived in a duplex with her father, two young-adult female siblings and her two children. I never met any of her family members. Her son, the boy, was approximately seven years junior to her daughter, his half-sister. Although her offspring resided with her, she did not have formal custody of her daughter. After spending a few minutes with her it was not hard to grasp why custody had been revoked, but I soon stopped focusing on this somewhat common convoluted custody issue contradiction.
She carried the diagnosis of intellectually disabled, but I never uncovered a report quantifying her I.Q. My best guess was that her cognitive capacity existed around a fourth-grade level. More often than not she was unable to provide simple facts concerning her son’s symptoms, diet, general care, developmental milestones or caseworker encounters. Her deficits handicapped my ability to uncover the basic information I needed to optimize his FTT course.
After more than six months and many visits, she had trouble recalling my name. She couldn’t repeat the formula preparation recipe soon after I gave it. And once her son graduated from formula, she couldn’t recall his toddler formula intake or details of the last meal with her. I became frustrated trying to gain information from her. Eventually I stopped asking.
I ultimately learned to accept Mom’s deficits. I acknowledged that my standard for what is necessary to nurture a child was vastly different from hers and for many within the clinic and community. I found comfort upon realizing others outside her immediate family — neighbors and co-workers and church members — oversaw Mom’s care (or lack thereof) and situation.
She never understood my worries about her son’s health; I don’t believe she was capable. I got the idea she always saw our interactions, during my encounters with her son, like a visit to the principal. I wished her mind could for a moment lose its deficits and somehow comprehend both my love for her son and the depths of my personally perceived failure at the clinic.
Failure all around
As I put more and more days behind me, I found FTT served as a near-perfect metaphor for my entire experience at the clinic. In broad terms, the lack of growth — resulting from not getting something necessary — certainly hit the mark for many of the pediatric patients in relation to their disease processes, family structure and place in society. Relative to the ineptitude and resultant dysfunction within the organization, FTT was a slam-dunk for the clinic itself.
Then I came upon another most fitting connection to FTT — a deeply personal and painful one. More than halfway through my service obligation, I found that I too, fit the metaphor.
In a position to which I felt called, sadly I myself was failing to thrive. As residency training drew to a close, I had vigorously lobbied to be assigned to the clinic. I became the replacement for another young NHSC doctor who simply walked away one Friday afternoon. I found myself, an inexperienced doctor, in a less-than-friendly environment, without any semblance of support — physical, professional or moral.
Daily, I tried to provide quality care in an unbiased and efficient manner. I caught grief from those who, in my estimation, operated counter to this. I began to lose heart as I observed the upside-down world that was the clinic. In this setting, the lazy and unqualified and toxic workers thrived. Apathy and bigotry, malice and cheating, all worked counter to the mission of serving — that of providing quality care to the poor.
In reaction, I turned inward and did the only thing I knew I could do. I simply cared for the children, trying hard to never compromise my integrity.
But as the days turned to months, months to years, the situation got the better of me. I became disillusioned and angry, hopeless and regretful, agitated and afraid. My spirit sank. I slept poorly. I wanted to leave the absurd situation that was the basis for my personal failure to thrive. It was at my nadir that I found the key to open the door to thriving in this seemingly impossible clinic.
My ability to throw off the yoke of failure had many facets, all of which were grounded in grace. I was given the strength to endure and not completely lose my spirit. Along with this came the ability to tune out the peripheral static — the absurdity of the organization, the malicious interactions with personnel and parents — that caused my soul so much pain. I grew my faith through the passages of Thomas Merton and prayer. I benefited from the support and strength provided by my family.
It finally became evident to me that that the clinic was exactly where I needed to be. During encounters I came to call golden visits — ones where I made a special connection or uncovered something truly important — I felt the breath of God moving me to act, to speak, to heal.
This grace brought me a couple realizations. First, it became clear the organization had a value-set antithetical to its mission and that its gauge for employee achievement was, in my judgment, inappropriate. Uncovering this freed me from the need for external validation. Second, I found the means to my personal success in the clinic lay in focusing my energies on that which was actually within my control — holistically caring for the malnourished infant, the delayed toddler or the scared pregnant teen. In doing so I became a sincere advocate for my patients — the physician that had been hidden within me.
In my dealings with FTT, my aptitude in child advocacy grew. As the cases mounted, I developed better ways to have an impact on FTT. Instances of mothers transferring their care to another clinic, and sometimes making formal complaints, forced me to alter my straightforward cause-and-effect conversation. I found a more sensitive manner in which to broach this difficult topic with the mostly young and immature, sometimes fragile and always untrusting mothers. My new technique led to tighter partnerships.
I also learned the difficulty inherent in attempting to change peoples’ behavior and found that oversight — more visits, more eyes on a child — led to improved growth and better outcomes. Finally, I discovered that I needed the help of others to truly find appreciable success in erasing the losses of children with FTT. What I learned from the case of the boy and his mom was integral to my growth as a true child advocate.
The malnourished boy
He was born in my third month at the clinic. Though the trend was obvious at our first encounter (his 9-month check-up), I held making the diagnosis until he fit the technical definition of FTT. At formal diagnosis he was just shy of his first birthday. Based on the boy’s poor growth and young age, and in light of his mom’s cognitive deficits, I saw him multiple times per month for almost two years. In sum I directed his care for 36 months of my four-year tenure.
He was hospitalized twice for FTT. During both admissions we observed appropriate weight gain while under strict dietary observation. We brought Child Protective Services (CPS) on board after the second admission related to the boy’s continued growth issues and his mom’s noncompliance with necessary outpatient follow-up. Aside from seeing me twice monthly, other individuals — a public health nurse, a social worker and a CPS case-worker — visited with mother and son on nearly as regular a basis.
We all watched to see that his mom provided him with a safe environment and fed him an appropriate diet. His weight initially sputtered, but he exhibited consistent improvement as he neared age 2. Thereafter, he continued to gain weight in an appropriate manner.
CPS closed its case as the boy’s mom met program requirements and as his growth normalized. He had just passed 2 years old when frequent in-home observation ended. Then I discovered that he was suffering from lead poisoning. Within a two-month span his level jumped from undetectable to five times normal. With little delay, inspectors found and removed the source of his exposure. He then rapidly returned to a normal blood-lead level.
The toddler faced major risks for developmental delays related to his poor nutritional status — his exposure to lead as well as his limiting home environment only added to this risk. Given his risk — and my inexperience — I sought the help of developmental specialists who evaluated and provided in-home therapy for the child. Happily, his last formal evaluation noted that he tracked appropriately in all developmental areas. Still, I pressed his mom to enroll her son in Head Start, to further build on the foundation laid by early-intervention and to help ensure optimal development.
The boy’s return to a normal growth trajectory not only helped promote his development, it also factored into his overall picture of positive health. He stopped having other medical issues — no more skin lesions related to eczema or wheezing related to asthma.
By his third birthday all indicators were positive. He was a generally healthy and normally developed toddler. I had confidence he’d continue to thrive. At the same time, I was humbled by my own misplaced lack of confidence in his mother. She loved him unconditionally, I realized, and had only needed some help.
A final encounter with the boy reinforced the beauty and importance of this case — my impact on the boy and his on me.
A final visit
He arrived that day for what was a quarterly check-up. Some months in the past he had made it a point to come into my office alone as his mom watched the TV in our waiting room. It was our thing. He usually sat in my lap and looked at the pictures of my kids.
As we visited this final time, my mind raced to what a true child of God he was. Now heading toward age 4, he was put together. His face and hands were clean, his clothes fresh, he wore shoes. He had no dried snot around his nostrils. He had short-cropped hair and faux diamond studs in each earlobe. He was handsome and had charm — emanating from his face and smile and swagger. I found him impressively interactive. He pointed to my kids as I again gave their names. He focused his attention on a picture of my eldest son — naked at 4 years old, running toward a beach. “That funny,” he said, his smile spanning his face.
In the exam room, and in front of a proud mother, he answered my questions about friends and favorite color and foods. She had reason to be proud — he not only looked well, he was doing well. He was about to begin Head Start. He had no developmental issues, and his blood-lead level remained normal.
I was happy about where he was, cognizant of where a different course might have led him. My happiness was tempered, though. I found myself saddened to think that I couldn’t possibly see him many more times. It was, nonetheless, one of those golden moments.
Concluding my tenure
Sadly but without regret, I walked away from the clinic at the close of my four-year commitment. Sadly, because I became connected to the families for whom I cared and because I left in the face of some neat accomplishments. Without regret, since I survived — didn’t become bitter, didn’t walk out, wasn’t fired — and did more and grew more than I ever dreamed I could.
I had tangible examples of advancing the health of my patients, comprising improved preventive care as well as improved outcomes for both simple ailments and chronic illnesses. Moreover, I had examples of broad-ranging programs promoting the health of the community I served. I had started programs in literacy promotion, case management and mentoring. As a result, we gave donated used books after all pediatric visits, more closely followed our patients with special needs (including those with FTT), and introduced some eager college students to underserved pediatric medicine.
I had also worked to improve the clinic’s vaccination rates and lead-poisoning surveillance. Within 18 months, we had taken an immunization program suspended by the state to one exceeding the goal for the entire country. And in my waning months the pediatric clinic was the best in the state with respect to following federal lead-surveillance rules.
I, too, found I’d grown. I recognized that some things, independent of right and wrong, were not within my control. I realized I had been offered a unique opportunity to serve as a true advocate for my patients and that this was exactly the role I was meant to play. Finally, I learned not to allow the clinic’s inanities to affect the care I provided.
Still, I could not endure the persistent absurdity of the clinic. I continued to face setbacks, never gained comfort in the toxicity of some of my colleagues, and failed to find professional security within the organization. So in that way, and similar to the boy, mine was a guarded thriving.
When I left, I was the only medical provider in four years to leave the clinic in a professional manner and on good terms. The pediatric clinic — its nuts and bolts, the practice and its operation — bore little resemblance to what I’d found when I started.
The fruit of service
The fruit of silence is prayer. The fruit of prayer is faith. The fruit of faith is love. The fruit of love is service. The fruit of service is peace.
I said this Mother Teresa prayer most days as I traversed the stairs to the pediatric department on the second floor of the clinic I called home. During my early days I uttered the words to help me derive strength to endure situations that pushed me to near-breaking. I said it with hope and on the basis of faith, trying to convince myself of its conclusion.
Through grace I found myself, while I gained unmatched medical experience. I lost the need for external validation for my efforts and accomplishments and truly focused my heart and energies on things within my control. I served. And as the dividend for my service, I found peace, feeling the breath of God moving me to talk and touch and heal.
I became an advocate for the children I encountered, and I opened my eyes outside the clinic and became a better husband and dad and neighbor. In the final days of my tenure there, as I said this prayer, I did so again on the basis of faith, uttering the words as thanks. I could finally characterize my personal standing at the conclusion of that extraordinary experience in that really strange clinic as a diagnosis I had penned for the boy at our last encounter — failure to thrive, resolved.
Chris Donohoe completed his National Health Service Corps commitment in July 2008. He is a general pediatrician who lives in Chicago with his wife and three children.