Wednesday, May 21, 2014

Feeding a Fragile Little Girl

So many stories to tell from today's activity

- the trip to Haiti's version of Home Depot (where they sell Gatorade)
- the talk I gave to the women who feed the more severely disabled children
- repairing the broken screens in the PT gym (Dr Sanford received many kudos for his good work)
- painting the PT gym walls
- trying to get help to schedule a visit to the US Embassy (a Shout out to the offices of Senator Kay Hagan and Congressman David Price for their quick responses and offers to help)

But the encounter from today that will long stick in my mind is the request for me and Beth (our PT) to take a look at a little girl who is felt to be so fragile that the caregivers at the orphanage keep her inside the dormitory area to avoid her getting injured or catching a cold.

Angelique came to them 3 years ago. She has hydrocephalus, severe intellectual disability,  minimal vision, severe cerebral palsy, scoliosis, torticollis, and contractures. She also has profound feeding difficulties for which she needs to be spoon fed a puréed diet so slowly that it is agonizing to watch .
As she coughed and sputtered through a few spoonfuls, we were told that it typically takes her 90 minutes to finish (or not even finish) her plate.

We made some suggestions about trunk and head support,but I'm not sure it's going to be possible for them to enact them. Instead, we offered to see if we might be able to find a suction machine back in the States that we could send them to help her when she aspirates (which, I think is often). Frankly, it was the low point of my day - a frustrating situation with no sufficient solution. Back in the US, this girl would have had many more medical interventions - a feeding tube, surgery on her back and joints- but, when I'm honest with myself, I'm not so sure that her quality of life would have been any better.

Like all of the  orphans, she gets a good deal of love and attention from the staff at Zanmi Beni. And after all, medical care is not an end in and of itself. It's used to prolong and enhance someone's life. This fragile little girl will likely not live much longer, but I do get some comfort in knowing that she is cared for and loved and in the end, isn't that what truly feeds us?

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