Watch the Cuts

I attended a law class as part of my MBA program. It was taught by a very educated, tough-minded professor, who was a physician specializing in genetics, before attending law school. She constructed the entire semester as a lawsuit, dividing the class into two groups: one representing the doctor, the other representing the parents of a child.

I sadly could not attend the first class because I had to work late, so I was assigned to defend the doctor. We covered all the steps in the lawsuit process, and as the semester unfolded, we began learning more about the child’s condition and whether it could have been prevented. We had to find and interview experts for that condition and learn the processes that parents and doctors were expected to take.

The class was based on a real child, and we had redacted copies of all the medical records. We called him Jeffery, which was not his real name.

Jeffrey was two years old and born with a condition that if not treated would lead to kidney failure, which is what caused him to need a kidney transplant. The condition was not easy to diagnose. In the state where Jeffrey lived there were neonatal screening tests—a screening for infants after birth to detect potentially fatal or disabling conditions in newborns. He did not pass the screenings, and the factor he failed in was hearing. His condition included deafness and kidney disease.

I learned a lot in this class. I learned that neonatal screenings are not the same in each state, which is still true today. I learned that there are between 31 and 39 components in newborn screening depending on the state. And that the expected follow up process varies in each state. In all cases though, the pediatrician who was the ongoing provider needed to advise the parents and document the follow up. In this case, the doctor had done all of that, and the parents declined the follow up repeatedly.

I wanted a neonatal screening when my children were born, and I was surprised how little I knew about it—my right to say no to some or all of it, and my responsibility if I did not act on the follow up. I was further stunned that the test Jeffrey failed was not required in PA when my children were born. Tests continue to change as we learn.

Today in the KFF news feed, I read an article indicating that a federally funded national committee which was creating and maintaining the standards for screenings has been disbanded. You can read the article for yourself here.

Babies and their parents are counting on us. So, what is the plan to replace the committee? Do we need a privately funded group to step up? I am now researching this issue. I don’t know the answer but when funding is cut, we need a plan.

If you want to know more about neonatal screening, click here.