Things I think about on tough days

This is a story about a little boy from Africa. His parents recently immigrated to the U.S. and he was only a little over a year old. L. contracted a bacterial infection, leading to a cold, leading to a systemic infection, all of which landed him in the pediatric intensive care unit.

It was a one in a million complication actually. Kids get bacterial infections all the time. The parents take them to doctors who prescribe medication, and modern medicine has taught us to expect that the infection will go away.

Every once in a while the medicines don't work. The bacterial strain multiplies, is immune to the medication, or who knows what. So L. was hospitalized and lying in the PICU as the infection ravaged his little body.

I believe at this early stage that the doctors did everything they could possibly do. The infection was particularly virulent though and his heart began to fail. And then his kidneys began to fail. In order to properly deliver medications he had arterial lines inserted. He also was on a ventilator to assist his breathing. As his kidneys were unable to excrete properly the excess fluid began building up in his tissues, and this further complicated his fragile heart that had to find a way to pump all of this excess volume through his system. In my mind this is where the heroic medical interventions take place: trying to restore some semblance of balance to a system that is completely out of kilter with itself. The doctors have to assess the relative acidity and alkalinity of the body, find some way to normalize it in the face of malfunctioning circulatory/respiratory and excretory systems, and there is the bacterial infection raging in the background that started it all. It probably is not as glamorous as heart surgery and is so much more difficult for people to appreciate the complexity of - but this takes real medical skill and heroism.

Weeks passed this way, with L. hanging desperately onto life. Sadly, the parents were nowhere to be found. In their culture it was typical to take a sick child to the hospital and leave him there until he was well again. The mother also was severely depressed - culture shock of a new home and the absence of her child caused her to attempt suicide several times. So L. remained in the hospital bed day after day, alone.

Ultimately, gangrene began to settle into his tissues. Once it starts it progresses quickly, and we stood by and watched L. lose parts of his fingers and toes. Then the skin over his hands and feet just started sloughing off altogether. At this point the hand surgeons and orthopedic specialists became involved and efforts were made to salvage his limbs. The parents remained peripherally involved, forbidding further amputations that could have helped stop the spread of gangrene. Days and weeks of limbo would pass with the doctors and parents in a stalemate over his care. Cultural differences almost killed this child, and no one seemed to know how to solve the problem.

I don't know if this is why they stopped seeing him everyday. I can't say that the orthopedic and hand doctors stopped caring - but they sure were indifferent. Doctors can get that way sometimes if you don't follow their plan. So the hand surgeons grafted his hands, wrapped them, and told everyone not to touch them until they gave permission. And the same was true for his feet.

Without intervention, hands and feet with open wounds that are left alone with so much swelling in the tissues will take on deformities. Open skin that is healing will heal in a fused state, turning a hand into something that looks like a catcher’s mitt: fingers will be flexed into the palm and the skin on the fingers will grow together so there are no spaces between them. The foot will drop down with the force of gravity and become stuck in a position with the toes pointing down like a ballerina.

I remembering having a confrontation with one of the hand surgeons, asking him what he thought was going to happen if we left L.'s fingers in this position of deformity without splinting them... and that perhaps he would want to be the one to work with this child after all the skin grafting was completed. I explained that L. was losing range of motion already because of the swelling and the loss of his fingertips, but it didn't matter. The MD felt hamstrung by the family, and he had established skin coverage as the only goal that could be agreed on. Function be damned; let the rehab people worry about that later, or maybe L. could have more surgery sometime in the future to undo the damage that was being done by adopting such a conservative plan.

So L.'s hands took on the deformities as I described, and they could barely still be identified as 'hands' when it was all done. Ultimately one leg was amputated at the knee, and part of the other foot. What was left of that foot was also grossly deformed, again because of conservative case management and inability of the team to bridge the cultural chasm between the 'system' and the family.

I worked with L. for months after that, making splints that would try to correct the deformities in his hands. There was so little muscle left in some of his fingers that pressure areas from splints were a real risk to exposing bone. I used a plastic elastomer, a rubbery material, custom formed in between what was left of individual digits, to achieve some degree of separation as the swelling resolved and the skin re-modeled itself. On one hand I was able to free one finger and the thumb from the rest of the hand, and on the other I was able to only partially free one thumb. Functionally, L. could use a crude pincer grasp with the one hand and a lateral pincer grasp with the other. And kids being kids, it was amazing and heartbreaking to see him function this way: trying to play with toys, trying to feed himself - as if that was the way his hands always were. No adult would have that much courage to try the way L. did.

A prosthetic limb was obtained for the amputated leg, but there were still problems with the other foot that was in such a deformed position. I made him a special foot splint that would allow him to bear some weight through that leg. It was quite a unique creation as he was unable to get the sole of his foot to the floor. The splint looked something like a shoe with a large heel on it. This was the only way to distribute weight along the foot and away from the toes.

Getting to know L. was a privilege. For weeks and months he was just a shell of a beautiful baby, lying in the PICU and unable to talk or move. All of our intervention at that point was comfort oriented: range of motion to his limbs, positioning in bed, stroking his hair and reading or singing to him. When he eventually cleared the infection and was taken off of the ventilator we got to see how special he truly was. Being just a baby, and having lost several months of opportunity for development due to the illness, he didn't verbalize much in the beginning - but his eyes told you everything. He developed an animated personality and watching him develop his vocalizations and beginnings of speech were amazing. He would cry and hate his prosthesis and splints, but he would hug you when you were done putting them on. Almost as if he knew you had to do it.

L. will grow up knowing that life is not easy. He will know struggle and even more pain because he will need more surgeries. But he has a deep understanding in his eyes, and he would deliver that understanding with a hug. The world could use a few more people like that in it, I have always thought.

Beyond the egotism of modern medicine, beyond the inflexibility of health care and educational systems, and beyond the anger that I express at it all from time to time, there are still people like L. that we all are supposed to help. On the difficult days, that is what I try to remember most.

Comments

Anonymous said…
Dear Chris:
Obviously, you are engaged in a high mission, and, you neeed to be proud of your advocacy for the unfortunate and under served who are brought to you. I know that L is considered most unfortunate, but, first he gives to you greater insight and compassion, and, second he recieves from you, your self and your love. He became enriched and so did you. how can you count these things????everyone adds differently, and we simply need to accept the math each of us feels most comfortable with...never expecting someone elses math will be our own...
hkpeck said…
I applaud your advocacy and dedication to L. I am an OT student in my last year, this story reminds me amongst all the assignments and studying exactly what OT is all about and what motivated me to become a therapist. Your dedication to providing L the best care possible is inspiring. You take on a medical model and make it as client centered as possible, which I have seen in my own fieldwork experiences to be lost at times. Your sensitivity to the cultural differences is also outstanding as you and the medical professionals seemed to be in a difficult situation balancing the wants of the family and the needs of the child. Ultimately what was done was the right thing for L. and his family.
One aspect I am not sure I am ready for as a therapist is watching a child, such as L. go through the pain of putting on a splint or other necessary things that are beneficial in the long run. When you mentioned that L. showed appreciation with a hug it inspired me, I will always keep that in mind. Your story of L’s struggle will run through my mind when I am growing weary of the minor struggles I face in life. Thank you for the reality check

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