Luisa is a now 5-year-old whom I first met just after her first birthday when her mom brought her to clinic with the chief complaint of, "Why is my baby not like my six other children?" That started our now 4 year relationship of dealing with cerebral palsy in rural Guatemala. That day, the one-year-old Luisa could not roll, sit, crawl, stand or walk. She was also microcephalic, had global developmental delays, and was ill with a probable aspiration pneumonia. We had a long talk about CP, we talked about the importance of physical therapy, we treated her for the pneumonia and parted ways. I thought I would likely never see her again.
How does one survive with no resources? I thought she would get recurrent aspiration pneumonia and die. Her mom, with her incredible, strong Guatemalan determination found a physical therapist about 20 minutes away and has been faithfully taking her there once a week for 4 years. So the child I never thought would walk, let alone survive, is now walking with assistance and alive and smiling at age 5. She still needs a person to hold an arm on each side of her, but her core strength was much better this year as she had much more stability in her trunk. She came to clinic with two of her big sisters and the three beautiful human beings are in the video clip.
She is still not growing and still only says the word "mama." We brought down a nutritional supplement this year that is used to rehab young children on the verge of severe malnutrition. It is called "Plumpy Nut" and comes in a foil packet, tastes like the inside of a Reese's peanut butter cup and each packet provides 500 kcal. We brought it down mostly to try to intervene with kids in the first 2 years of life who are failing to thrive, but we also thought we would give it a try with Luisa. We sent the family home with a packet and mom came in to clinic to get all of the instructions.
I am in awe of her mother. She is such a beautiful, strong woman. It is one of my favorite moments each year getting to see her. This year I got to introduce her to my own daughter, Grace. We gave Luisa's mom instructions on how to use the Plumpy Nut. Unfortunately, as I suspected, it was too sticky for Luisa to eat. She still has many hurdles in just trying to eat most foods. At her physical therapy clinic Luisa now gets some sort of feeding therapy, so perhaps over some more time we can try Plumpy Nut again, time will tell.
Every year I learn so much from Luisa and her family. She is a well loved child who reminds us of the fragility of the human condition, but at the same time shows us our grit and determination to live.
"Be content to progress in slow steps until you have legs to run and wings with which to fly." - Padre Pio
Lauri Pramuk, MD