20 December 2016

Is Two Years Too Late

And you thought this was going to be a post about how it's been so long since I've written anything.  Ha!  Gotcha!!

Nearly two years ago we had a gym full of therapists . . . our little department was busting at the seams!  For one short week in February, we had 4 therapy practitioners, the best therapy-assistant an OT could ask for, and an Orthotist/Prosthetist.

In preparation for that time, B. and I had saved up some really tricky cases for these visitors so that our patients could have access to better minds than my own.  We all have skill sets and gifts . . . and some days what we have just isn't enough.  But that's the beauty of team!


One day, a man showed up at our gym door.  He was the principle at the local middle school.  He said he had heard that we may be able to help one of his students who can't walk.  We asked him to return the next day, this time accompanied by the student.

S. was roughly 15 when we first met.  She waddled into the gym, on her toes, in a squatting position, not far off the ground.  I placed a walker in front of her, but she struggled to be able to lift herself into a full stand, even with a lot of help . . . her hamstrings and achilles tendons were just too tight.

She told me that according to her family, she walked normally until around the age of three.  Then the story gets really fuzzy.  Did she have a high fever from malaria or meningitis?  Was it polio?  Was it actually CP?

There were no answers.

All we knew was was that walking and standing in a squatting position was greatly limiting her life.  She had to expend more energy than her peers to walk to school, using the school toilets was difficult (remember, they use squatty-potties in Niger) and unhygienic, she couldn't reach the chalkboard and so wasn't being called on like other students.

We gave her an appointment and asked her to come back when our Orthotist/Prosthetist would be visiting . . . hoping we could make some kind of corrective orthotic to help her feet and ankles be better aligned.

Unfortunately, S. didn't return when we asked her to.  Instead she came just a couple of days before L., our superwoman-who-makes-legs-and-other-cool-things, was going to leave.  After doing an assessment, L. recommended something called a Ground Reaction AFO . . . a slightly more complicated version of the simple AFO (Ankle-Foot-Orthosis) she had been teaching us to make.

Because L. would be gone by the time the plaster mold's of our patient's legs had dried.  We were going to have to make these without the supervision of a trained professional.

But we did it.  Somehow, we got the hot plastic melted and placed correctly enough . . . and we even managed to cut them and remove them, all while maintaining the integrity of the solid piece.

We were ready for her return so that we could make sure they fit, modify any trouble-spots, and teach her how to walk upright in them.

We were ready . . . and we waited.

And waited.

And waited.

And I left Niger and got married.

And then came back.

And got into the swing of things . . . and completely forgot about S. and her Ground Reaction AFO's.

Last month I was doing some inventory on our equipment and was on a major junk-we-never-use removal kick, when I came across her AFO's.  As I removed the spider carcasses and webs from the molded plastic, I asked B. "Why didn't we give these to S.?  Was there a problem with them?"

"Nope.  She never came back."

I was disappointed, but that's a common reality in Niger: lack of patient follow-through.

Life went on.

Last week, Maiguida and I went to the local Wednesday open-air market.  We just needed to pick up a few things and were going to be in and out in a flash.  But then I remembered my onion man . . . and it's been a while since I've been to see him, so I wanted to pop in and say hi.  Normally we would make our way from the front of the market to the back where he sits, but instead, this time, we decided to walk along the road and slip in through the back entrance.

"Déborah!" I heard a girl greeting me.  I quickly scanned her face and realized it was S.!  As I approached to say hello, I realized she was squatting at the door of a mosque, begging.

My heart sank.

Surely we could help her!

We chatted briefly about her family and school . . . they were well, but she hadn't passed her exams so she couldn't continue her studies.  Now, begging was her best option.

She agreed to return on Monday for a fitting of her AFO's . . . and she was there waiting when I arrived at work.

After making a few minor modifications, we put them on her and S. made her first attempt to stand.  The left one worked perfectly!  The right one, however, not so much.

If the problem had been the AFO, we'd have been able to tweak things and make it work.  But the plastic wasn't the issue.

Now nearly 17 years old, the muscles and tendons of her right leg and foot are so tight that she cannot straighten her hip and knee to be able to stand and walk.

As we begin a stretching and strengthening program and I consult with L. and some Physical Therapists who have more experience with this than I do, I can't help but wonder: are we too late??

At what point do we say "we just can't change this"?

Lately I've had to make some hard decisions about which diagnoses we can actually treat well in our context.  Each time I set a stricter parameter there is another new grieving process.  When I change the structure of our outpatient services I question my choice, wondering if I'm giving up too soon on a specific demographic or population that deserve life-changing therapeutic intervention.

The reality is, we're not just two years too late.  For S. we were 14 years too late.

And the grief cycle begins again . . . hopefully all the way through to acceptance.

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