"Conditions Not Compatible With Life"

When facing the prospect of having a child with significant medical challenges and more so one who will likely die, physicians inform patients that their child may have "conditions not compatible with life." This is the go-to phrase of medical community. Any parent who's been in our position can relate.

I distinctly recall when I first heard this term. It was unsettling, but I didn't break down in tears (that was for after the appointment). It was during my 20th week that we realized the baby's heart was not normal (at the time her heart was smaller than a dime, but advances in fetal cardiology have enabled doctors to see the valves, chambers, etc). I was devastated, but hopeful.

As time elapsed I became aware of more and more abnormalities with the pregnancy. Both Ellie and I were affected. I was also receiving information from an array of doctors--none of which I clearly understood. So, I ordered the obstetrics book used in medical schools and read it over and over again until I was fluent and understood the science, methodologies, possible diagnoses, and treatments. I searched and read as many articles as I could find on PubMed (the research database of medical literature). Nothing I could find was positive or offered a glimmer of hope, but I took charge of our medical care and made decisions that I felt were in our best interest. I had hope.

Under all this pressure I refused genetic testing. I wanted to know if something was wrong, but in reality nothing would change. What was the utility of knowing? It wouldn't change anything. I could find out that she only had a heart defect or I could find out that she had a "condition not compatible with life." Relief or distress. These were my options.

In retrospect, I regret nothing. In fact, I'm glad I didn't have an amnio. Had I discovered Ellie I was not healthy, I would have been devastated. My physician team really wanted me to have an amnio so they could be prepared for delivery and we could determine if we should "save my uterus." "Conditions not compatible with life" often mean that the mother undergoes a emergent c-section because the child is unlikely to survive (I will never be able to deliver a child naturally again). From a medical standpoint, why put the mother through a surgery if the child is likely to die anyhow?

Although the past few months have been heart-wrenching, full of peaks and valleys...I would have never changed a thing--our decision to have a child, carrying Ellie, refusing genetic testing, irreversibly harming my uterus, going without sleep for months, quitting my job...nothing. Looking at her on a daily basis, watching her grow, how could I have made any other choice?