Hypoplastic left heart is a complex cardiac condition requiring multiple surgeries for repair. The survival rate five years after surgery is approximately 65%. Clearly having both Trisomy 18 and Hypoplastic Left Heart Syndrome presents a very complex set of questions and decisions for the parents and the doctors.
Should the baby have heart surgery? Is heart surgery futile in this instance? Would the baby be better off with comfort care rather than invasive procedures not likely to significantly prolong life? Are there mitigating circumstances which make this baby more or less likely to have a positive outcome? Who decides? The parents? The surgeon? The cardiologist? The neonatologist? The geneticist? The hospital ethics committee? The insurance company? Where do the hundreds of thousands of dollars (or more) for complex surgery and weeks or months of ICU care come from? These are the kind of discussions which take place when a baby has a serious condition with a limited life expectancy.
Reading this article reminded me how ridiculously simplistic our public debate often is about issues like this. When people throw around words like “infanticide” or “execute,” they are poisoning important conversations, either purposefully or because they don’t understand how these things actually work.
When a baby has a condition incompatible with long-term survival, keeping him comfortable while allowing him to die naturally is very different from “executing” someone. And people who engage in infanticide are prosecuted for murder. It is not something that is done or that people are in favor of. Reasonable people can disagree on the best way to handle these issues. But we need to make sure we are discussing the same thing and basing our discussions on facts, not misleading innuendo or outright falsehoods.
The baby in this case did undergo heart surgery and subsequently died at 14 weeks of age, clearly a difficult situation for all involved. I propose the most important first step in discussing these situations is to acknowledge how complex they can be and to provide a healthy dose of compassion for the parents and others involved in these difficult decisions.
