April 15, 2011 | 26
The fact that he’d stopped crying scared me. Damn rear-facing car seat. I couldn’t see him as I was driving to the hospital at 3 a.m. Now the hospital construction was making it impossible to find the entrance to the emergency room, let alone a place to leave the car. Getting out of the car and opening the back door, I saw that bubbles had gathered around my infant son’s mouth. His blue lips pushed forward in an odd pucker. His head bobbed violently with the effort of taking air.
"Oh my God," I said, and ran with him – past the guard desk, down the halls. Arriving at the emergency room triage desk finally, I simply held him up to the nurse, saying, "My son." Now limp, his skin was speckled blue and white.
He was wearing one of those one-piece bear suits, with the ears, and looked like a stuffed bear lying placidly on the table. "Get this off of him," said the doctor sharply, a young woman likely just out of training. Unzipping his suit, I felt his skin – bone-cold and soaking wet. "He’s mottled," said a nurse, looking at the doctor. The nurse seemed scared. With my medical training, I knew "mottled" is a word frequently associated with shock – when the body isn’t getting enough oxygen. His heart rate was over 200. He did not cry or move when the nurses stuck him repeatedly with needles, trying to get an IV line into his body. I stood at the edge of the room, leaning against the metal sink while the young pediatrician and several nurses surrounded him.
As a child psychiatrist, I was now on the other side of the doctor-patient line.
He revived quickly once the IV was in and the inhalers had begun. The resident admitting him to the floor, in fact, seemed irritated by the decision to admit him. "He looks good," she said, "He’s moving good air." Since she hadn’t been there, I explained to the resident that he was very sick when he arrived. "That’s what RSV babies do," she said. The respiratory syncytial virus, a.k.a. RSV, sounds exotic. But it’s a virus most of us have had and experienced as an annoying sniffle. In my otherwise normal son’s 3-week old bronchi, though, RSV caused such an intense production of mucus that his respiratory muscles couldn’t cope with all the goop in the way.
Later, only hours before my son was transferred to the ICU in acute respiratory distress, my husband and I sought out the resident to discuss the fact that he seemed to be declining. A different resident, but the same words, "This is what RSV babies do – he’s moving good air." Essentially, I noticed the tendency for the doctors to discount my experience as a mother, looking only at what they were seeing in front of them.
While still in the hospital, I had another peculiar experience. Some well-meaning providers seemed to find ways to subtly blame me for what had occurred. On the medical floor, the attending doctor asked, "Do you feel guilty because you have a cold too?"
"Huh?" I thought. No, it did not occur to me to feel guilty. Comments would often begin with "That’s why I always tell people to…" Or, "See – that’s why I…" In such exchanges, I felt oddly blamed for his acquiring and developing the severe cold that made it impossible for him to breathe.
Was I being overly sensitive? Was I projecting my own guilt onto them? Maybe, but I don’t think so. The experience I had – both with being vaguely discounted and subtly blamed – was not an anomaly or something that occurs only when doctors and nurses are not giving a sick child good care. In fact, the care we received was generally excellent. Rather, the experience highlighted for me what I think may happen all the time to parents with sick kids.
I’m back at work, doing what I do – evaluating and treating naughty kids, sad kids, worried kids, angry kids, shy kids. While things are back to normal, I have noticed a shift in my response to residents’ presentations of cases and in the way that I hear the rhetoric of my colleagues. Even my own treatment decision-making – pausing and forcing myself to think before coming to conclusions about what the parents have or have not done.
A child I will call Tiana to protect her identity showed severely disruptive behaviors in the classroom — throwing chairs, hiding under desks, and even stabbing her arm with a pencil. To be evaluated by the school mental health clinician, the mother must give in-person consent, but she has not shown up twice. Tiana is complaining of a tooth ache, and when she opens her mouth, a large black hole exists where her molar was. I am not under any delusions about "understanding" this mother, but I imagine myself giving her advice – "Come to the mental health visit," or "Take Tiana to the dentist."
Eventually, I did meet the mother at her home. She was profoundly sad, almost unable to move, defeated by years of crack addiction. Ultimately, Tiana went to live with a relative. But I always felt that if I had been successful in helping this mother, or if the system itself had been less punitive and more helpful, maybe this woman could have successfully parented this child – better for her and better for her daughter.
If the professionals involved in this family’s life could have effectively conveyed a sense of openness and lack of blame – would this have made a difference in the mother’s willingness to engage in the care system for herself and her child? Maybe not, but maybe so.
Something as serendipitous as a bad case of RSV is quite different from the severe behavior and mood problems I treat in my work life, but they’re both bad things to have happen to your kid. Likewise, parents with a child who is demonstrating severe mood or behavior problems tend to be blamed – by people at the grocery store, by the grandparents, by each other, and by doctors, too.
Historically, parents have tended to be blamed even by medical professionals when there is a set of symptoms not fully understood by science. According to Lidz in the 1960’s, the "schizophrenogenic mother" provided a "profoundly distorted or distorted milieu" in her family, resulting in her child’s development of schizophrenia Another "proud" moment in the history of psychiatry was the development of the notion of the "refrigerator mother" in the 1950’s and ‘60’s. Mothers of autistic children were said to have "defrosted just enough to have a child" Micheal Yudell, an assistant professor at Drexel University, is one of several psychiatrists who have commented on the shifting nature of whom we "blame" for particular illnesses like autism, depending on the current understanding of the pathophysiology (i.e., how the disease works in the body) of the disease. The child guidance field has similarly reflected a tendency to blame mothers for children’s misbehavior. In her book Child Guidance and the Democratization of Mother-Blaming, Kathleen Jones argues that this tendency to blame individual parents allowed policy-makers to skirt the importance of socio-cultural change to reduce juvenile delinquency.
More recently, to counteract these trends, groups of physicians and parents have spoken out about the need for empowerment of families in public policy, developing concepts such as "family-driven care," a term used frequently in the public sector and child welfare worlds.
Child and adolescent psychiatry is one of the youngest branches of medicine and there is much we do not know. Take a disease like attention deficit hyperactivity disorder (ADHD), a disorder in which people have difficulty with focus, planning, and sustaining attention. Huge scientific advances have been made in understanding the diagnosis and treatment of ADHD. Despite all we know, if you asked me a simple question — "What causes ADHD?" — I would simply look at you with a blank expression and shrug.
Any doctor who tells you he knows what causes ADHD is going to try to sell you tincture of goat foot next. But mystery around why people are inflicted with such diseases still shrouds our understanding of ADHD as well as other well-known disorders — Tourette’s, schizophrenia, obsessive compulsive disorder, depression, oppositional defiant disorder. Such ambiguity leaves a lot of room for mommy blame.
The tendency to resist blaming parents is further complicated by the fact that, at times, parents do make things worse. It doesn’t take 9 years of medical training to know there’s a problem when a mother is yanking her kid around, smacking him at the slightest snivel. Many children have experiences like this, and lead successful, wonderful lives. But take an already sensitive child, or a child who can’t express himself well with words, or a child that doesn’t have other things he feels good at, and you’ve got a kid that’s going to be smacking his neighbor in math class.
In more subtle cases, a child’s behaviors can become problematic when the child’s temperament and the parents’ temperament do not mesh well – known as "goodness-of-fit." For example, if an anxious mother reinforces a child’s fears of separating from her, the problems may worsen and lead to other behaviors. On the other hand, parents may interact with their child a certain way because of forces beyond their control – such as their own mental illness, or because they are sleep deprived from holding down multiple jobs, or because they had no parental role models.
The old nature-versus-nurture split does not make sense anymore – the child’s brain (nature) and the parent’s actions (nurture) have a dynamic relationship, each influencing one another. Parent-child relationships, just like other environmental factors, can impact not only how the child behaves or feels, but also the actual development of the brain.
On the one hand, putting the responsibility entirely on the parents is not being appropriately humble about what we do not yet understand about the brain and behavior. On the other hand, claiming that the child’s emotions or behaviors can be attributed purely to raw biological material is not giving credit to the immensely important role that parents do play in their child’s development.
For example, Tiana had a sister I’ll call Renata living in the same home environment . Unlike her sister, Renata continued to thrive despite her mother’s challenges; she had many friends and received A’s and B’s in her classes.
Among the various problems child psychiatrists see in children, there are differences in the degree to which the problem is "biological" and is "dynamic" (related to relationships between parents and children, for example) or "psychosocial" (related to the environment – like Tiana’s chaotic world). Child psychiatrists themselves differ in the ways that they explain and understand a particular child’s behaviors. An inherent conflict is that doctors who see troubled children are expected to come up with individual solutions. When the solution is not a particular medication, or a specific parent-child relationship, the doctor feels at a loss for how to intervene.
In my work life I continue to struggle to balance a humility about what we don’t know with a confidence in what we do know. I struggle with keeping the tendency to blame parents in check while at the same time calling parents to task about their parenting when necessary. I struggle with identifying what can be changed at the level of an individual and what requires change at the systems level. I struggle to continue to be willing to dig into these systems problems so that I don’t just go home helpless and hopeless about what to do for kids like Tiana. Despite this struggle, at the end of the day, at least I can come home to my curly-haired toddler, kiss him on his warm, soft cheek, and be grateful for the rise and fall of his chest.
About the Author: Justine Larson is a practicing child and adolescent psychiatrist and Assistant Professor of Psychiatry at Johns Hopkins Hospital. She will soon be leaving Hopkins to become Chief Psychiatrist for a county public health system. She conducts research on improving access to mental health care for the urban poor. She lives in the Washington, D.C. area with her husband and two children. In her spare time she enjoys riding pretend rockets with her son and singing showtunes with her daughter. This is her first time as a guest blogger.
The views expressed are those of the author and are not necessarily those of Scientific American.