Be Happy

This little ditty is borrowed from http://www.radiohead.com/

Madison was born after a relatively normal pregnancy. But immediately we knew something was wrong. The baby did not move, cry or take any breaths. She had a good heart rate which told me that the placenta was supplying adequate oxygen and could thus not account for the most common reason why an otherwise healthy baby might be depressed at birth. She was immediately placed on a ventilator.

When she was about two days old I knew that she would die soon. She had not taken any breaths on her own since birth. She did not open her eyes and was in a constant state of flexion, with tightly pulled in arms and legs. There is a condition called hyperkeplexia where children will startle and flex up. It can even be fatal if they stay flexed too long and do not restart breathing before their brain suffers from acidosis and a lack of oxygen. I thought this girl might have a severe form of this condition. But kids with hyperkeplexia have normal intelligence and when not flexed are normal. These children have normal EEGs. We performed an EEG and found that Madison lived in two states: she was either seizing or had no brain activity. I tried Vitamin B and anti-seizure medicines. Nothing worked. Madison's brain did not work.

I sometimes wonder why a case like that of Terry Schiavo garnered so much attention since everyday many people are taken off of life support. I have withdrawn supportive care and continued comfort care for many patients. Despite the euphemisms we create, it is never easy. Still some cases are harder than others.

After many conversations with Madison's parents they decided that their daughter would not want to continue living in her current state. With her brothers and sister close by, we took the ventilator tube out of Madison's mouth and handed her to her mother. Madison immediately flexed and then turned pale. She never took a breath. Her mother held her close to her breast and cried that she was sorry. I knew that she was not sorry for what we had done, but was sorry that it had to be done. Madison's father put his arm around his wife's shoulder and his palm on Madison's back and quietly wept. Later I gave Madison's mother a hug and whispered in her ear. I told her she was a good mother to Madison and gave her everything that a mother could give to a daughter. Madison's brothers held her and cried. At just 9 and 12, I know that they should not have to experience such things so young. And yet so many children do. I know that no parent should have to make the decision to take their newborn off of life support and yet so many have. And I stand by, helping as I can. Taking solace in my purpose to help them realize as normal this completely abnormal event.

And I feel.... lost