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.

for the love…

I love my job. I love my job. I love my job.

I had great intentions of writing an epic entry about how much I love my new surroundings and how challenged and encouraged I feel at my new program.

Then today happened.  And well.

I love my job. I love my job.

but some days it sucks.

5 mon old with a trach due to a cyst in his airway that she was born with.  She is beautiful, she smiles and tracks and loves people.

She lives in a neighborhood that happens to be rape capitol and most violent places in America. Its also one of the poorest.

For three weeks since I got here we have worked to get him, his pregnant, single, Mom who is younger than me HOME.

I have talked to her pediatrician, home health, social work, discharge planning, ENT, GI, God and Mom. I spent my first two weeks of internship loving and advocating for this little girl.  Because this is what I believe in. I believe that early intervention can work in the slums, I believe these kids are worth fighting for.

Today was D-DAY.

Home health called after rounds after I told Mom that today was the day.  They  did a reevaluation….they won’t send anyone to THAT neighborhood anymore plus Mom is a social concern, did we know she was pregnant??? And single??? And uneducated???

Yes we knew and yes we are skeptical too. Thats why we spent four weeks teaching Mom to do trach care and tube feeds. She learned it all beautifully and yes she is poor but she is not stupid.

And the fact is, this is America. We don’t take kids away from their parents just because they are medically complicated.  I’ve been in a society like that and believe me while this situation isn’t ideal that one is a diaster and a moral travesty.  The thought of this beautiful baby who is cognitively a 110% been warehoused makes me sick.

Mom deserves a chance.  The baby deserves the chance at his blood family before being turned over to foster care.

After my attending and I begged home health, listened to the SW and the nurses bash Mom, home health, the universe and our team.  And getting no where for hours and hours.

I had to go tell Mom.   She told me that she knew we didn’t trust her especially the nurses….and she thought I was lying because every day I come in and say he is going home and yet he never does.

An hour later I got another page and we went through it again.

And then I came home and crumpled

I love my job. I love my job.

because I love these children. I don’t care where they live, or what country they hail from or how much we think their situation is terrible.  Its not about that.

Its about the child.

A precious child who while I am telling her Mother and she is yelling at the me, at the situation (I would yell too).  She is just smiling at me as if to say I forgive you.  I forgive them.  I love you because you care even if you fail.

and i crumple in the light of her grace, of her wisdom.

I only wish that we could all just for a moment stop moving, stop screaming, stop writing paper work and filing medicaid and remember that in the end this is about that.

Its about the child…

Spectator Sports

You’re beautiful.

Those words might not mean much to you. Maybe you hear them often, maybe you think them often. Maybe you find these words trite or cheesy. But these words have so much power in hearts of young women with skeletal dysplasia or craniofacial syndromes.

I have a lot to process from 4 weeks of skeletal dysplasia.  But this I think was the most important thing.  We have replaced circus side shows with reality TV. But almost morbid fascination and fixation on being little or being funny looking has not changed, its only be rewoven into the politically correct fabric of our culture. We as doctors care compassionately and encourage patients to live the best lives they can.  But inside do we still secretly subscribe to the side show theory? Do we also secretly enjoy being a part of a tight community but would be disappointed if our children turned out to have a role in the side show?   I know what our culture thinks. But what do I think as a physician?   What do I think as a giant dwarf with midface hypoplasia, kyphosis and knobby joints?? D o I think little and funny looking is beautiful????

The answer may seem obvious. To answer anything but YES is to deny my own self.  But in the back of mind I begin to dissect away the layers of how I approach my double life.  The glistening, scarred but sacred layers of my childhood filled with the joy and the pain of being different but also the irresistible knowledge that comes from seeing the world through the eyes of difference. But the pristine, orderly, tightly woven layers of my medical training overlay those layers now. Those layers have also brought joy, pain and knowledge.   The layers tell two different stories. The narratives conflict. One tells me that beauty is seen through love,  shared experience and incredible diversity of humanity. One tells me that beauty is seen through achievement of standards, of milestones, of parameters of GOOD (normal)  and NOT GOOD (abnormal).

Which narrative is more compelling? Which narrative is definitive of who I am and what I do?  What scares me is that the medical layers are deeper than I realize. The brainwashing that I resisted, the kool aide I refused seeped in somehow. I find myself torn.

As I met children day after day who looked different from my usual patients and learned the parameters which we monitor their condition…disease….difference…??! I almost lost myself in some ways. But I also found it so many surprising ways.  My first procedure standing next to the resident and him coming to realization that I was one of these children. I had all the parameters in the NOT GOOD category.  But I was something else than just a side show. I was a colleague.  I had crossed the line and entered the spectator bleachers.  In the moments that I held my hand out to comfort my crying patients as they woke up from surgery or told them to suck it up and do their PT (because I did it too) I found a sense of closure….a sense of beginning and a sense of incredible beauty.

Beauty is not a simple or trite thing. Its raw, complex,  intricate and fragile. Fragile because yes physical youth fades. But more so because we fail to appreciate it and help it grow. We trample it, we try to quantify it, put it on a scale, on a chart. But beauty is too wild to survive such cages.  The problem with doctors is we try to apply our logical, protocol driven training to beauty, to art and most dangerously to social norms.

SO I dried the leaky kool aide and found myself missing the skeletal dysplasia kids on our fracture clinic days. I found myself lonely for my tribe and also longing for the moments when I could whisper.

You’re beautiful. Truly beautiful to ears that so rarely hear such words.  That are so often trampled by our society conception of NORMAL.

Children Keep Dancing…

There are a million things to say about Kenya which I can’t even begin to process

Today I started my peds ortho away with my childhood doctor. For starters there are ghosts, memories, hopes, dreams, sleepless nights, screaming, pain, sweat, blood and tears behind every corner even with the remodel of the hospital the worst and yes even some of the best of my childhood is contained within these walls. I tred carefully for as has been the theme of the last week I stand on sacred ground.

As I child I feared/loved my doctor and he haunted my steps at times, made me think before I lept. Now he is my attending. A strange change of power….its odd for him too. About half the time he introduces me as his former patient, the other half as a random med student.  He teaches me quite passionately and patiently. he is far more patient with me sitting in the OR or struggling with my sewing than any surgery attending I have ever had. Of course he is. But I am wary with him,  its awkward a lot but it works best when he is teaching me as my attending and not trying to process the oddness of me at 25 grown up, on my own and not his patient.

There are strange moments though where its very hard for me to sit back and play med student.  I scrubbed in on a Cervical fusion today (ha!). The induction took a looooooooooong time. It was a skeletal dysplasia kid, one of my kin.  The neurosurgeon made several jabs about how my doctor’s “population” always took this long.  I bristled, my face was hot. hey buddy, those are my people.  I remember once there was a ENT who made several really unnecessary comments about Chinese  students with a Chinese student sitting right there.   I remember thinking what an idiot for not even noticing the med student was Chinese for crying out loud. But here I was pierre robin in all siting there staring at this highly educated doctor and I realized that he had no clue.

In a way it made me happy. Sometimes I forget that I can do this. Blend in if I am sitting. Later in the case he starts to inquire what a good Southern girl n from such a good school was doing in Delaware.  I told him I was referred here as a child, he looks at me and still doesn’t see it. Finally my doctor rescues him, she has Kniest…she is just tall.

Good for her, neurosurgeon says

Not good for her orthopod says

Honestly its all I have known I am neutral on it at the worst, I say really not wanting to debate my perspective on losing/winning the genetic lottery for the whole OR.

then they go talking about how people with conditions go into what they know.

I was glad more than anything that the secret was out I felt so much more at home among my people than I did in the blue scrubs.