Nandini Razdan recently returned to the US after completing an internship with MEDLIFE in Lima, Peru, and is now applying to go to medical school. Read more about her experience with patient follow-up in her Intern Journal entry below.
Over the course of routine patient follow-up appointments, I had the opportunity to meet a very special patient named Eduardo. We met with Eduardo’s mother near his house in an extremely dusty and desert-like community on the outskirts of Lima. While walking to their house, Eduardo’s mother took the time to stop, pick-up, and drag a large piece of cardboard all the way to the front of her house, where there was already a growing pile of trash. I later found out that selling recyclables was the primary means that Eduardo’s mother earned money, as most of her time was spent caring for Eduardo.
We entered the humble dwelling and made our way to the bedroom that Eduardo and his mother shared. Before embarking on our journey to Eduardo’s house, I had failed to ask MEDLIFE doctor, Dr. Jose, about the patient’s condition and history. My jaw gaped open and my breathing stalled as I entered the bedroom and saw what seemed to be a breathing skeleton.
Eduardo had the misfortune of developing Cerebral palsy (CP) as an infant. Cerebral palsy is a group of non-progressive conditions caused by damage to the motor centers of the brain. CP causes physical disability in human development, primarily concerning bodily movement. Limited movement leads to limited activity, which can be accompanied by lack of sensation, sight-based perceptual problems, communication problems, and sometimes impaired cognition. In the unfortunate case of Eduardo, he choked on a small piece of food as a baby, and for an extended period of time was unable to breathe. The hypoxia caused cerebral damage, and from then on, his life would never be the same. Eduardo is now in a near vegetative state — unable to talk and minimally able to move. The years of lack of movement have caused his body to become deformed; he is all skin and bones with no muscle or fat to be seen, and his hands are completely bent forward due to lack of usage over the years. He is unable to speak and his inability to control his bowel movements forces him to wear a diaper. Eduardo does have some level of remaining cognitive perception. He smiles when he is happy and whimpers when he is sad. He recognizes his mother and is able to understand basic conversation, even though he is unable to respond.
Eduardo’s story really hit home for me in various ways. I had an older sister who for ten years of her life was also in a vegetative state, but due to a genetic disorder, not Cerebral palsy. Living in the US, my family struggled with dealing with my sister’s condition, but still had access to some of the best home-care possible for her from the first day of her illness. My sister had a comfortable hospital-style bed, a state-of-the-art wheel chair, access to any medicine she needed, and nurses at her bedside day and night. Eduardo had a simple bed with a quilt and few pillows, and a second-hand wheelchair that looked uncomfortable for his bony body and that caused his feet to drag on the floor.
The purpose of our visit to Eduardo was to give him a nebulizer treatment because he was having trouble breathing. As I held him in my arms during the treatment, I looked above and saw a roof full of dust, which clearly was not helping his breathing. Had we not come to bring the treatment, Eduardo’s mother would not have been able to afford paying for the treatment in the hospital. My sister’s illness was incurable, but CP has the potential to be prevented from worsening through years of care and therapy with specialists. With the lack of resources living in poverty in Lima, Eduardo’s family had little to no chance of accessing the specialists needed to prevent his condition from developing as it had. When MEDLIFE first met Eduardo several months ago, extensive damage had already occurred and follow-up treatments were limited.
Eduardo’s mother told me about Eduardo’s history, and I was shocked to find out that the small body I held was that of one who was a whole year older than me! I thought Eduardo was no more than 10 years old, and he was actually 23. Two things struck me with this new finding; firstly, how much life and will to live was in this human to have made it to 23 years in such a physical condition? Secondly, I noted how different our lives were despite our similarities in age — simply due to fate. I am a 22-year-old enjoying my time in Peru and trying to add to my experiences in order to enhance my career. Yet this 23-year-old was simply trying to live another day and breathe a bit better. Furthermore, Eduardo’s mother told me that Eduardo’s father had passed away from liver disease just two weeks before, making her the primary breadwinner. Eduardo’s father had been an alcoholic, and one can imagine that the stresses of poverty and caring for a handicapped child contributed to his drinking problem. Also, she had another daughter who was 16 years old, but who lived with another family because she was unable to take care of both Eduardo and her daughter. Had my own family been in this family’s position living in poverty in Peru, I could have easily been that daughter who was forced to live with another family because my own could only take care of my sister.
Dr. Jose has been taking care of Eduardo for two years, visiting him whenever he needs medicine or when he is sick. A few days after my first encounter with Eduardo, I accompanied MEDLIFE nurse Ruth Varona to take Eduardo to the hospital because he potentially had pneumonia. Being seen by a doctor in Peruvian public hospitals can be a very lengthy process. It took approximately six hours for Eduardo to finally be seen by a doctor in the emergency department, yet nurse Ruth stayed and waited with Eduardo and his mother the entire time. Eduardo might not have access to the home care that he deserves, but having his devoted mother by his side at all times and MEDLIFE doctors and nurses ready to help are the only reasons I can think of for the smile on this fighting 23-year old’s face.