(Warning: longer than normal post)
I arrive at 7:40 am, ten minutes late, with Elias in my arms. He’s still dressed in his fleece pajamas and neither of us has had breakfast. Approximately 20 familiar and unfamiliar medical personnel sit crowded in the small maternity center conference room.
We are not expected.
As I squeeze past the folks sitting in collected seats by the door, I consider taking another extra chair in the back of the room, but am waived to the one open seat near the head of the table. After I sit down with Elias on my lap, Dr. Lou, sitting directly to my left, asks me to introduce myself.
"My name is Christy and this is my son Elias who spent 94 days in this NICU. He was born at almost 25 weeks and needed to be resuscitated."
Dr. Lou passes me some papers to review and then continues to facilitate this Ethics Forum on how to support families and staff to make more informed decisions about resuscitating babies below 27 weeks.
There is a chart on one of the papers Dr. Lou hands me, published in the journal of Pediatrics, which shows the results of a survey of 107 medical staff on the resuscitation of babies born between 22 and 27 weeks gestation.
For babies born between 24 and 25 weeks:
* 5 said they would strongly encourage resuscitation
* 24 said they would recommend resuscitation but be comfortable with parents’ request to provide comfort care only
* 35 said they were neutral,
* 34 said they would recommend against resuscitation but be comfortable with parents request to resuscitate
* 3 said they would strongly discourage resuscitation
It is no wonder that parents receive inconsistent messages from doctors, nurses, and medical staff about the future outlook for their baby. But how can there be consistency when every child responds so differently to his or her premature birth? How can the medical community possibly predict the life of a child?
And who gets to define quality of life?
By his medical file alone, Elias is not a "positive outcome." But what he has taught me is that outcomes cannot be defined solely on health and ability. And what makes for a good quality of life cannot be decided by only those of us considered “normal”.
I remember the Christmas scene in Martha Beck's memoir Expecting Adam.
Martha's three children open gifts one after the other. When the two girls open their presents, Martha sees the familiar quiver of lips that tells parents this is not the exact gift wanted. Wrong brand. Wrong color.
Adam, their son with Down syndrome, opens his gift next. He begins by unwrapping the small package taped to a larger present.
Batteries.
His mother recalls:
“His mouth fell open in astonished ecstasy as he held the batteries up to the light.
‘Oh wow!’ he said. Mom, look! Batteries!’
Before we could divert his attention to any other gift, Adam leapt to his feet and began running around the house, locating every appliance, tool and toy that ran on batteries. The whole time he babbled excitedly about all the things he could do with this fabulous fabulous gift. As we watched, it began to occur to all of us ‘normal’ people in the family that batteries really were a pretty darn good Christmas present… Something about Adam always manages to see straight past the outward ordinariness of a thing to any magic it may hold inside.”
I carry this image with me to the meeting, along with Elias. I also bring a sleigh filled with therapy appointments, medical bills, and lost expectations. For even magic comes with a price.
We are not only welcomed at the table, but I am asked to share my experience and perspective with this ethical issue that has no right answers.
I don’t know what I would have decided if there had been time before Elias’s emergency delivery to contemplate the short and long term affects of a premature child. I didn’t know then what I know now, so it is impossible for me to return to the person I was before Elias, even in my mind, hypothetically, to say whether or not it would have been helpful to receive a survey of medical professionals opinions about whether or not they would try to save my first child.
I am here to bear witness to the conversation. I am here as the lone voice for families. Families who receive gifts they didn’t ask for but love nonetheless.
Not despite the challenges but with them.
As the meeting comes to a close, Dr Lou says, “Actually, before we end, I’d like to see if Christy has anything else to say since she and Elias represent why we are here.”
I say something about remembering that every child, every parent, every family is different so though in theory I believe in consist information the whole concept challenges me because of how unpredictable these smallest of children continue to be and that as parents our perceptions of what is OK can change and grow right along with them.
But Elias speaks more clearly, more succinctly, than I.
In rare form from his usual wiggle worm self, he sits contently on my lap for most of the meeting. He looks around the room at these people who are present for the most intimate of passages, who are not gods but humans who are meeting to discuss the ethical decisions and consequences of their work, and every few minutes, as if to remind them that statistics and outcomes represent children, Elias sticks out his hand, more of a salute than a wave, and says, "Hi."
(Photo taken last Christmas in Oregon)