For many families, the first trip to a developmental pediatrician is a major turning point. A common hope is that the doctor (me) will hear the parents’ concern, but upon seeing their child, will assure the family that all is well. The child is developing “typically” and the symptoms and behaviors that brought the child here are a false alarm. I love that scenario. I relish the feeling of having a family leave our clinic happier and visibly relieved.
The opposite scenario is unfortunately a common one: A family is faced with autism, intellectual disability, hearing impairment, a language problem, genetic syndrome, cerebral palsy, ADHD or another developmental problem. I don’t get an opportunity to assure the family that all is well.
It usually becomes evident to me in the time it takes to walk with the family from the waiting area to my office that a child has significant developmental issues. The child may look unusual, not respond when I call his name and engage in an atypical set of behaviors. I don’t know what the problem is, but I know there is a problem.
Soon, I begin formulating an image of the struggles likely facing this very young child and his family. This is what I refer to as “the crystal ball effect.” I know so much about what is likely. Meanwhile, the family is holding its breath hoping the child is fine.
The rest of that two-hour session becomes a sort of debate in which I argue both sides, collecting data supporting those initial impressions or happily dashing them as an error, inaccurate for any number of reasons.
In a field where there is no blood test for confirmation of diagnoses, our observations are what developmental pediatricians have to go by. Observations are data. We seek to increase the data’s validity through standardized tests, rating scales completed by parents and outside sources such as daycare or preschool and sometimes multiple visits over time with the child. But in the end, we are using the clinical skills of observation and experience to draw conclusions.
One of the things I struggle with is balancing the knowledge I possess—my crystal ball, based on 20 years of experience of the outcomes of children with similar findings—with a parent’s right to and need for hope.
That is not to say that treatment will not be effective and that we can’t optimize the functioning of the child. There are always statistical outliers. We can never know for sure a given child’s outcome. The younger the child, the more natural variability comes into play. The crystal ball effect is based on playing the statistical odds. But, much like the weather, the outcome of the World Series or the state of affairs on Wall Street, statistics take us only so far. After all, it snowed 10 inches on October 29, 2011. Need I say more?
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Hey, Lisa, thanks for sharing this blog, and for coming up with a term for that feeling we get when we walk from the waiting room to our offices, knowing for sure that something is wrong with the patient we’re about to see and trying to figure out how, over the next hour or two, we’re going to deliver the news that will essential alter forever the lives of all members of the family. The Crystal Ball Effect must be a universal phenomenon for all physicians, regardless of their field of expertise; no matter what you do, there are those situations in which you know what the score is and have a pretty good idea of how the game is going to end.
Of course, there are good parts of this and bad parts. On the one hand, knowing what the problem is will permit us to answer questions, prevent the need for useless “million dollar work-ups” and allow the patient to get treatment quickly. It will also permit us to provide the family with support at a time when they really need it. On the other hand, knowing the answer slams the door once and for all on the magical thinking that everything is OK. So, it can be really tough to transmit this news. But it’s our job. And in the long run, doing it well will benefit the patient and his or her family.
Thanks for a perspective from the doctor’s view. I’m on the other side, although my wife and I are VERY aware of all the possibilities for both of our boys.
From our side, we’ve had more than a few doctors who either don’t get it, or don’t want to do what you talk about here. They’d rather push the burden of detective work and diagnosing to another professional. It’s been frustrating to be viewed as “that parent” who is just looking for problems when the child is “probably going to be just fine.”
Please keep up the tough work. The families who don’t know really need to know, so they can do all they can for their child, and those of us who DO know need support in our journey to do the same.
Thanks for a great post!
Thanks for the doctors’ perspectives. As for the parents perspectives, it is like the world is falling apart and we don’t know where to turn. Our daughter exhibited signs, our first child; we had no “history” to base anything on. All we knew was we what saw, and it scared us to death! Thank God we went to Albany Medical Center; there the doctor helped us, explained to us, cared about us. I can’t understand the pressure you’re under, and unless you’ve gone through it; you can’t understand how the parents feel, when your child looks at you and says “daddy, why can’t I stop ….”
A wonderful essay – I enjoyed reading it.
Kathy O’Connor
Einstein IRB