Wednesday, January 2, 2013

Disability in the developing world

One year ago, in Guatemala I met a beautiful baby named Luisa. Her family had just celebrated her first birthday. She was the youngest of seven children. Her mother brought her to the clinic wrapped up in a sling, nursing, like most mothers here in Guatemala. While taking her medical history from the mother it was evident before I could even see her that she had some pretty profound medical issues. Her mom wanted to know why she could not sit, crawl, walk, talk like her other children had by this age. She also could not get her to take anything in her mouth other than breast milk. The little girl would block anything from her mouth and gag. When I put Luisa on the exam table we saw a beautiful little girl with severe cerebral palsy. She was microcephalic (small head circumference), and she could not hold her head up at all. Her legs were held in a tight scissor lock, her wrists flexed, fists balled up. Her mom and I had a long talk that day about cerebral palsy and her prognosis. CP in the U.S. is difficult, here it is devastating. Her main obstacles facing her were aspiration risk, most of these kids die of pneumonia since their muscles don't work properly to protect their airway. Luisa had it last year when I saw her that we treated. Her other main risk was malnutrition. The family needed to keep trying to get her to accept something in her mouth other than her mother's breast. We talked about working with Luisa's muscles so they don't contract - get stuck in one place.

Well, beautiful Luisa and her strong mother came to see me our first clinic day this year. Her mom was smiling this year. Once again, Luisa was wrapped up in her sling nursing as I asked her mother my litany of questions about her developmental progression, her diet, what kinds of illnesses she has had in the past year. She just turned two last week. I have to be honest as a part of me was not sure she would even still be alive this year. Her mother was happy to report that she can now roll over and control her neck, holding her head up, and she is taking some soft foods and allowing herself to be spoon-fed to some degree. When I asked her if she had any words, she smiled at me and said, "Yes, she says mama". Rabbi Abie says that is the only word she really needs. She smiles and laughs. She has not had a pneumonia since I saw her last year. When I examined her I was shocked by her muscle tone. She was no longer contracted, but was very loose. Her hypertonicity was replaced with hypotonicity. Fingers were not balled up, wrists not flexed. Her mom had been working with her muscles, doing her own occupational therapy. She can hold her head up well. She is in much better shape than I had imagined. She still faces a long road. I doubt she will ever walk. She clearly brings so much joy to her mother, and to me.

After her exam her mother wrapped her back up in the sling and sat down so we could talk about what things to watch for with her, Luisa clearly wanted to start nursing again. Her mother had her laying across her lap but did not have her shirt up so Luisa could get to her. The mother was keyed into everything I was saying but I just kept getting distracted by Luisa. With her little hand she was trying with all of her might to get her mom's shirt up so she could nurse. She was fighting for life. She is a survivor because of that fight.

Dr. Lauri Pramuk

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