When it becomes more important to state 'why' you do something

If you ask 100 occupational therapists what they do you will get 100 different answers, because the nature of the profession is to help people do the things that are important to them.  Every patient has their own priorities, and that makes all the stories different.

Instead of focusing on the 'what' I like to focus on the 'why.'  When I need to be reminded 'why' I do what I do I like to drag this story out.

I knew a young family and they were unable to conceive.  After spending many thousands of dollars they made some arrangement with a young teenage mom so that they could adopt her baby (just about to be born).

So they go to get the baby and sign all the papers and get on the plane.  The baby was only a couple days old. On the way back home the baby goes into cardiac arrest and the new mom (a trained health care professional) gives this new baby rescue breathing and chest compressions. They are admitted directly into the intensive care unit when they get off the plane.

It turns out that the baby had several STDs: syphilis, gonorrhea, chlamydia, plus other bad infections including CMV - any of which could be deadly in a newborn. If that wasn't enough the baby had a poorly developed liver and developed a condition called necrotizing enterocolitis - they had to take out most of her small intestine as it had died inside her. They also put in a feeding tube and a tracheostomy (the baby's lungs were underdeveloped too and she couldn't breathe except with a ventilator). The baby also had a colostomy bag.

So the next eight months were a constant vigil in the ICU for these parents and their family. The feeding tube could never work properly so they had to provide liquid nutrition directly into an artery - a process called hyperalimentation. It is effective for the short term but ultimately will burn out your liver, and that is what happened to the baby. She became so jaundiced and sick that as a last ditch try they flew her to another city that had a great transplant program and prayed for a miracle. Unfortunately, the child's mesenteric artery which supplies the liver was also malformed and so she was not a candidate for any transplant. They sent her back to the hometown hospital.

Now I imagine that everyday these parents faced a fork in the road and could choose to either keep forging ahead or they could throw up their hands and give up. I am not sure if anyone could blame them if they did that - after all, they did not bargain for this situation: months in an ICU with a sick child that is not biologically theirs, and running up hundreds of thousands of dollars in medical bills (of course insurance companies at that time balked at coverage given the adoption and that this was 'pre-existing'). But the parents never quit anyway. They kept with it, every day, every night. Sleeping in chairs in the ICU. The baby had some moments of real quality - she was not neurologically impaired and so with regards to her cognition she was a normal 8 month old baby.

In the end, it was apparent that the baby was in pain, close to death, thrashing inconsolably, and jaundiced the color of yellow-green mustard.  The parents made an unthinkable decision and chose to end her life by withdrawing the ventilator support. The baby was alert and cognizant of her surroundings, which made the decision to withdraw support so much more complex. I can't understand the depth of love it took to do this for their child. Their child - not really theirs. But theirs nonetheless.

The baby died in her real mom's arms one night. After so many months in the ICU and with every day an act of love I think that these parents deserved to be called the baby's "real" parents, regardless of the biology.

This is not a story about heroic doctors.  It is not a story about caring nurses or diligent occupational therapists.  Most of the real stories and the daily events that are out there are about the people we care for.

I provide occupational therapy because every parent has an unbelievable mission to help their own child, and when things go wrong OTs help them do things that matter to them.  It is not so important 'what' you do because those stories will change with every patient and every family.

What matters is 'why' you do it.  I do it because it is all about human need and the value of normal occupation like the dreams and hopes of a family, even in the face of impossible situations.

This is a story that I use for the purpose of focus.

Comments

Christopher, No one, absolutely no one, has ever stated our "why" in such an eloquent way - a way that actually does describe our "what," as well. Thank you for sharing this inspiring story.

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