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One day in outpatient neurosurgery clinic, the attending and I met with a young couple who just had their first child.  The tiny little boy was receiving a surgical consult for his sagittal suture craniosynostosis (premature sagittal suture closure).  The couple seemed hesitant at first, listening to the doctor as she explained the diagnosis, without much interruption.  The doctor then proceeded to tell the family about the two “equally efficacious but slightly different” methods of surgical treatment.  The doctor calmly rattled off the procedure, the recovery, the benefits and risks of each, using models and using language the family understood.  The doctor simplified the choice by emphasizing that the main difference between the open and laparoscopic surgeries is size of the scar versus having to wear a reshaping helmet.  The plastic surgeon was there to explain her part in this procedure, of reshaping the infant’s skull to help contour the head to a more normal shape.  Once the doctor stopped to ask for questions, and I started to think this procedure sounded more innocuous than I previously thought, the encounter takes an unusual turn: Mom cries silently while dad stares down at the little boy, wiggling around on the bench.

What was going through their heads?  We soon found out.

In pediatrics, it is really like you have two patients: the parent(s) and the child.  I’ve learned that a surprising amount of what pediatricians do is reassuring parents about what is happening to their child.  It is amazing to witness, for the vast majority, how much parents love their children.  From working in a family practice clinic and seeing adults on a regular basis, I’ve seen adults more motivated to change after they hear their smoking harms their toddler or how their diet at home contributes to their child’s obesity.  Parents do things for their children that they often wouldn’t do for themselves. 

Fear is a huge driving force.  I see it not only in pediatrics, but in all of healthcare.  People feel so powerless.  I’ve seen parents request endless tests for their child, argue with doctors that they are not doing enough to figure out what is wrong with their child, or yell at doctors that they deemed incompetent in some way.  That was fear. 

Working in neurosurgery clinic the next week, I found that the love of your children and how much you worry for their safety never abates.  After seeing a 38 year old man for a surgical consult for resection of a brain mass, his mother tells me, “If I could take that tumor from him and undergo the surgery myself, then I would.”  I guess your children will always be your little babies. 

This new mom from the story was beside herself, almost incapacitated by the decision as to which surgery to select.  She asked over and over again why there were two procedures if each were equally efficacious.  She had the doctors spell out every possible complication and asked how children that had a larger incision hid it in their hair, or how the other group minded wearing a helmet.  It seemed to me a more minor detail in comparison to greater decisions that are made in this child’s life daily, but I did not understand fully the reason for the questions.

It was later on we realized that mom also had premature fusion of her sagittal suture and underwent a large, open procedure early in infancy.  She has to keep her hair long because of the natural cowlick from the scar tissue formed along her scalp.  She sees her parents and what they are going through after hearing about their grandson undergoing the same thing their little baby girl went through so long ago.  Her father refused to come to the appointments with them because he had such intense emotions related to reliving those events.  We failed to see initially in those tears, that she recalls her photos from her first birthday party, where she was pictured in her contour helmet.  She fixated on those pictures and seemed to vow never to have her son look back on similar photos from his childhood.  She questioned how the scar would affect how he could wear his hair, as detailed as the length and the cut.  We finally saw her personal values, intensely colored by her own experience.

“Do you have kids?” “What would you do for them???” “Will he hate us later on in life if we choose one over the other?” the mother anxiously queried.  She wanted us to make the decision for her, to absolve her of her guilt if something ultimately went wrong with the treatment she picked.  I believed she would have felt every ounce of that guilt.  The doctor and everyone else in the room refused to take away their autonomy by deciding for them, even though at that point, it may have been the easier option.

She asked question upon question and the doctor answered them patiently.  Eventually, the doctor started to grow impatient, as she was growing exceedingly later in seeing her other patients.  She stayed in the room, but it could be seen that her body language was disengaged with this struggling mother.  As the doctor grew tired and her explanations less thoughtfully and carefully worded, the poor answers to the mother’s initial questions inevitably led to more worry and thus more questions.  I’ve found there is a fine line between telling a family enough information that they understand what is happening to their loved one, but not too much that it seeds fear and ultimately more anxiety.  It is far harder to “undo” harm once a patient is slapped with to a new diagnosis or exposed to some piece of medical knowledge.  It then takes twice as much work to relieve the worry in their mind.  For some of this panic, I thank the countless “resources” on the internet.   

The doctor came out of the room fuming at the “excessive amount of questions” brought up by the family.  It’s frustrating for both sides if this communication does not go as well as planned.  It is a sad time for our health care system when questions are a taxing, burdensome part of our interaction with patients.  I wish we could rejoice in questions, as it shows parents and patients are involved in their or their child’s care.  The doctor maintained her professionalism to the very end, but investment in the conversation and empathy for the mother’s feelings, were compromised. 

Going a step further, I think we all might have some trouble dealing with sorrow.  We often cannot look it in the eye.  We scramble for the tissue box upon the first glint in the corner of someone’s eye, whether it is out of discomfort with tears or out of the feeble attempt to in some way alleviate suffering.  To me it just shouts, “Wipe that up!” -- A message I would never want to send.

In reality, the tears of this mother stemmed from something even deeper.  She believed her family was recently experiencing a true streak of bad luck, including family deaths, financial trouble, and their home burning down.  The sorrow of our daily lives does not stop at the door of the hospital, but clings to us as we go about our day, and can carry over into our interactions with others, our outlook on life, and perhaps even our health outcomes.  I will always remember to tread lightly.

I’ve learned a great deal about myself over the last few weeks.  Perhaps I’m only learning more because I have yet to know what it feels like to be a parent and the potent love you feel for your children and the slight madness you feel when they are ill or injured.  I’ve loved pediatrics: the transparency and trust of children and the light and innocence they bring to clinic.  I’ve appreciated the breadth of interactions I’ve been allowed: intimate moments when a mom asks her son to leave the room so she can speak about her concerns of abuse, to seeing babies’ first days in the world, to an adorable toddler tearing apart your exam room.  I’ve enjoyed seeing people trying to do what is right so that their children can have a shot at a good life.  I love the idea and the promise of caring for the minds and bodies of our collective future.

- Anonymous, M4