The cost of early, aggressive medical care

There is no relief.

Our Children's Hospital is quite literally where the world comes for answers, but what happens when there is no answer?  When do we stop searching for an answer, and who gets to make that decision?  Where is the support for patients and families who are left without an answer?

In the first 16 months of his life, my son was seen by 20 different disciplines at our Children's Hospital.  It seemed like every referral to a new specialist led us to add yet another to our list.  GI recommended we see ENT and pulmonary to further assess his aspiration.  Genetics recommended we see neurology for a possible neuromuscular genetic mutation.  Ophthalmology wanted us to see a specific neuro-ophthalmologist.  It felt as though each discipline did not want to have the last word.  No one wanted to be the one to say "we just don't have an answer."  Instead, there was always someone else we could be referred to, and maybe they would have an answer for us.

As a medical professional myself, I consider this outstanding medical care.  My son has been cared for by some of the best, most highly respected leaders in healthcare in the country.  We have seen physicians with such advanced, specialized experience, families travel from all over the world to seek their knowledge and care.  They work collaboratively to provide the highest level of care to their patients and are committed to research and education to advance our healthcare system as a whole.

My son had 105 medical appointments in his first year of life and was left without a unifying diagnosis, leaving me wondering, what was all of this for?  Did we really need to go through all of this just for you to tell me that there's nothing "wrong" with my child?

We must slow down and ask ourselves, what is the cost we are willing to pay to find an answer, recognizing that an answer may very well not exist.