In 1906, famous Italian economist Vilfredo Pareto observed that 80% of Italy’s wealth was distributed among only 20% of the population. This 80/20 principle, known as Pareto’s Law, has since found application in many areas within the world of business/finance; for example, in manufacturing, while it’s relatively easy to fix 80% of process/product defects, the last 20% often take considerable effort.
This is Jeremy by the way…I promise you Steph would not ramble about economic theory in a blog about her daughter… or any blog... And...I digress…
What we have learned in recent weeks is that there is a similar corollary in medicine. The vast majority of the time, your doctor (or someone he/she can refer to) can provide very adequate medical care. However, in the small percentage of times in which you have a very serious medical need, there is often a world of difference between “average” medical care (or even “above-average”) and that which is provided by the elite within the medical profession.
Without a doubt, what Steph, I, and Pinny experienced over the past week at the Cleveland Clinic was elite care. And as you have been reading, elite care was needed, as Pinny’s seizures have continued – and in some respects intensified—despite the exclusion of the glycine encephalopathy/NKH diagnosis. In my view, because so much of a child’s developmental potential becomes (at least as I understand it) hard wired in the first months and years of life, and because many of the underlying causes of neonatal seizures can disrupt/halt/damage this development, we needed to figure out what was causing these seizures ASAP.
At any rate, the experience at the Clinic was amazing. This metaphor probably does not do the Clinic justice, but the clinicians there are all like elite athletes that not only make to the pros but also make the all-star team. Only they are saving and improving peoples’ lives—not entertaining us.
We chose to go to the Clinic due to a recommendation that Dr. Elaine Wyllie is simply the best, most-experienced pediatric neurologist within driving distance. Supporting her is an impressive team of sub-specialists that are also the best of the best in areas such as genetics, metabolism, etc. Virtually everyone we interacted with… the physicians, the NPs, the nurses, the techs, et al… were not only excellent clinicians but were also diligent, thoughtful, approachable, humble (despite their distinction) and caring.
And everything done at the Clinic seemed a step above what we were used to… people responded to emails, EEG leads are dutifully measured out to the right spots, techs constantly monitor whether patients are hooked up correctly, nurses rush in to help when parents alert that a seizure is occurring… The campus itself is an impressive spectacle. The organization is set apart operationally; people and processes that make things happen efficiently. I could go on. Even the cafeteria was quite good!
The following is what we hoped to get out of this experience:
- A second, more-experienced, and comprehensive set of eyes to look at Lucca’s case; perhaps there was something in the troves of data already accumulated that was missed;
- Their process/direction/strategy to properly diagnose Lucca’s epilepsy (i.e. have we ordered all the right tests? What epilepsy causes are still on the table; which are eliminated?);
- A re-evaluation of Lucca’s meds, as the previous regime in our view was less than optimal;
- And… while probably unrealistic… a firm diagnosis and treatment path for Lucca’s epilepsy.
They delivered on 3.5 of those 4. I will spend the next blog talking about what we learned (hint: it's good news). But for now, I’ll leave it at this: the Cleveland Clinic was immeasurably valuable to us. Hopefully you never have to go there, but it is a special place. Thank you so much of all of you for the prayers, calls, texts, cards, emails, voice mails, etc… These things were the emotional food we needed to get through the week.