Through the veil…..

When you think about a sick child…what kind of images flow through your mind??  Probably unhappy ones.  Children should not suffer. Its one of the rules of the universe….all religions seem to agree on it….all moral codes…the innocent should not suffer.

But kids get sick and they do suffer.

its reality. call it the fall. call it evil. call it the facts of life.

kids suffer.

So what do we do with that information?  Well we try to alleviate their suffering…..what does alleviate mean?

11 yo with cystic fibrosis (bad, bad thick mucous slowly clogs your lungs and your pancreas making breathing, digestion and eventually sugar balance difficult).

CF is a bad disease and we require a lot from our patients to maintain their health.  Our patients are frequently in the hospital with lung infections.

What kind of allowances do we make for children who suffer?  Is it ok if they don’t always have to obey the rules?  What about doing their therapies?  Taking care of them selves?   Do we  not cause further suffering by just letting them get away with stuff?
On the CF floor, we never make the kids do their Pulmonary function tests if they don’t want, we never make them control their blood sugar even if the have normal BMIs because they are CF kids so obviously they All are failure to thrive (MYTH!)!

Frankly it drives me to distraction.  Do you know what the increased mortality is from poorly controlled diabetes with CF…A DECADE. A DECADE of a life for a person with CF??? (thats with the average life span, 25% of their lives)

I realize sometimes we have to choose our battles but we also have to make sure  to help our patients fight theirs.  CF sucks. Being sick sucks.  Not being able to have a normal childhood sucks. Dying in childhood sucks more.

I don’t think we alleviate suffering by pitying the patient or pampering them. I don’t think we teach them self-advocacy and I don’t think we teach them to fight.  That doesn’t mean we should cram medicine down their throats or be cruel or legalistic about or force them to do anything. It just means we are honest with them  and that we encourage them not to think about how their life sucks because they are different but by giving the same expectations and grace we would give any child.  A sense of boundaries, a sense of security and encouragement.

Yes Children suffer.

But children suffer more when we don’t love then and treat them with the expectation that they matter enough to us that we will fight for them.

:::off soapbox::::

Bedfellowes, Limbo and the Land of Opportunity

Pediatric Pulmonary medicine is an American creation.

In Kenya we had one ventilator:

We had to fight off the adult doctors for it. Every time one of our kids was crashing, we rushed up to the ICU and talked to my dear mentor and friend Dr. L  (med/peds) who ran the P, N, M, S, etc- ICU and figured out who needed the vent the most and who had the best possible outcome. Sometimes our kids won. Sometimes a premature a baby would win. Sometimes the big people won.  The decisions were daily, the stakes were high, people lived and died off our decisions. Sadly none of the children I saw ventilated  made it back to the floor or nursery.  We had very little.   In fact, I was there when the Haiti earthquake happened and we all watched the news and had ICU envy….the Haitian patients got flown to FL….we wondered where were these magic planes to the land of opportunity last week when the one ventilator ICUs of Haiti were deciding who lives and who dies and where were these magic plans for Kenya?

In the TCC, a step down ICU for children who have tracheotomies and/or are ventilator dependent we have infinite ventilators.  We have ventilators in the hallway, in the corner, we have back up ventilators.  We have BiPAP, CPAP, pressure control, volume control and I am fairly convinced that somewhere in the back closest somewhere we have ventilators that makes you fly.  I spent the first two weeks of my pulmonary month among  children who would never have even had a chance at THE ventilator, some who outside of the world of shiny ivory tower of the best pediatric care in the world would never have made it even in the West. But here they are still breathing, still hoping.

Some of these children melt my heart, one is 7 yo and lives at the Children’s hospital. He goes to school a few miles away every day on the bus, he is in the first grade, is crazy about trains, Star Wars and people.   He is abandoned and on chronic TPN (IV food)  so other homes for medically complex children won’t take him.  So he lives with us,  Child Life,  nursing assistants and the occasional on-call resident are his play mates. His nurses, teachers and fellow patients are his family.    I am broken for him. SO happy that we have the technology here that lets this beautiful soul grow up and learn how to read and go to the zoo and meet his first girlfriend. But my heart is so broken that as a society we have no place for him.  We saved him but we don’t want him.

I know about not being wanted…because you are different..my sweet babies in Romania have taught me about that.

There are some others like my friend.  A 29 yo math genius with a neuro-muscular disease who can talk by moving his eyebrows with stickers on them.   A much beloved boy with spinal bifida who loves sports and whose family is devoted to him.

But then there are others who I don’t know what we are fighting for….their lives are nothing but the sensation of pain and struggling to breath.  One baby has an inoperative congenital heart defect and is bleeding from her gut. We can’t do anything for her except keep her on a ventilator, we can’t make her better and her parents refuse to withdraw care.  Another had a devastating brain injury and has no higher brain function and limited brain stem function considering he is still on a ventilator.  He seizes, winches in pain and rarely opens his eyes.  Just because we can save them all…does it mean we should……

….am I too bold to suggest we should let children die…. and am I a terrible pediatrician….should I turn in my white coat and quit now….

what I learned from the ONE ventilator is that with technology comes great responsibility….in the states we don’t always remember this because we have so much technology that it seems like an unlimited resource. But we have other resources that can also be unlimited that we must not forget: suffering.  We doctors have a commitment to alleviating it.  There are many forms of suffering. There is physical pain, grief, hopelessness and anger.  Children dying is not something we talk about in America.  We have insulated our selves where technology can stop death,  we can beat death. But what if that is not the goal?  What if at the expense of saving ourselves, the parents, etc the pain of grief or loss or separation, we buy a child, an innocent child a life of nothing but pain?  Did we do the right thing?   And who did we do the right thing for??

We have a responsibility as pediatricians to our patients and sometimes I think as I get paged to the TCC at 2 in the morning for a seizure or child being coded or nearly coded. I sometimes wonder in these children who know nothing but physical pain that they are crying out, screaming,  begging, please let me go. Its ok, this is what should happen.  The best way to save me, to love me is to let me go to Jesus.

But I of course pull all stops. I race downstairs and hope to God that we can just make it till morning when the meeting of the minds can tweak the magical ventilators that make dead babies fly and beat death again.

…..after the crisises of the night are averted or as I get in my car post-call in the dark parking garage and have a chance to think I can’t help but wonder if the children we tweak and play with as our own lab of physiology would make the same choices for us if the situation was reversed.  And I wonder if the children we save that society doesn’t want would offer us the same gracious welcome to human family.

I shake it off and pull out into the sunshine and think about grateful African mamas hugging their dying babies who can’t be on the one ventilator but are so grateful for the palliative O2 and prayers w offer  and my Romanian babies reaching out from their cribs as I tidy up at the end of our play session.

And I know one thing for sure,  these children understand grace, mercy and loving thy neighbor far better than I do.  I seat at their feet and learn.  And yes I think in so  many ways I learn more from them than from all the ivory towers of medicine combined.