A 4 yo boy ran onto the pediatric ward and beelined for bed number 16. As he got closer, he ran up to the head of the bed and his face brightened up when he saw his sister's face, and then he started talking a mile a minute. Her face brightened up too, at the sight of her brother. I smiled as I observed their love for one another.
The sight brought joy and sadness to my heart at the same time, as her prognosis isn't good. Anita is 7yo and 2 days ago her legs became so weak that she couldn't walk and her arms became weak so that she can barely raise them. As her brother is running around her bed, she is laying on her side and can't move out of that position without her mom or dad helping her.
Anita just came to us the day before, and all blood work only confirmed my suspicion that Anita is suffering from GBS - Guillian Barre Syndrome. GBS is a condition that causes paralysis that often progresses from the legs to the arms and if it gets to the muscles that help us breathe, it often causes death. In our situation here, we have no medicine to alter the course of the disease and we have no ventilator to help someone breathe, if their muscles quit working. Most of our success with GBS comes from the patients who don't need a ventilator, as ventilators in PNG are quite challenging.
As her doctor, my job is to try and provide Anita with the best care we can. As I looked at her and her brother, I knew I wanted to give her every shot she had at making it. Her best shot at making it, was to be at a hospital that had the ability to breathe for her, if she couldn't. It is quite difficult to make that transfer when someone already requires assisted breathing, so I contacted nearby hospitals to see if they take this girl now, in case she would need intubated later that day or night. Getting a positive response from one of the hospitals, I went to the family to explain what their options were.
The language of Tok Pisin is made up of about 1000 words. With the limited number of words, there isn't a specific word for each word in the English language, so most concepts are communicated by describing the word or words you are wanting to say. This often gets the concept across without specifics or details. It works, but it has limitations.
Knowing that this was going to be hard to communicate to the family, I asked our Pediatric Nursing Supervisor to help me communicate clearly to the family. I would talk and at times the nurse would repeat what I said in Tok Ples (specific language of the village or area, often more specific). They asked questions and we repeated things numerous times.
As the dad asked if there was a medicine we could give her to help her and if they were going to have to pay anything, my eyes diverted to her bedside again. The brother had just run onto the ward again, up to the head of her bed, his face bright with excitement as he whispered something to his sister. I smiled as I saw this brotherly affection and then, looking back at mom and dad, I explained how there is no medicine for this illness that we could give her, but that her body just needed time to fight the infection and get stronger. As we talked, it seemed, to me, like the family understood, that they agreed that taking her to the other hospital for possible intubation would be the best. We prayed and then proceeded to get our ambulance ready to take her to the other hospital.
Lunch came and went, I was back at the hospital and the Pediatric Supervisor told me that the family decided to take the patient home instead of going in the ambulance. I was stunned. I wondered what I did wrong or if there was something else I could have done to get the family to understand her condition, to understand what was going on her in body.
I thought I had communicated clearly, had taken the necessary steps by having our Pedi Supervisor with me to explain her condition and what we needed to do, and yet they didn't get it. I know my worldview is different than many PNGians, but until now it hasn't seemed to really matter. I understand the physiology of disease, of infections, of microscopic organisms that we can only see in microscopes that wreck havoc on our bodies, but not all PNGians understand this. In general, they understand what they can see and what they can't see or can't explain, is often attributed to witchcraft or sin in the family, among other things. Taking the sick person home, so the family can pray about the situation and can have peace among themselves is a common way to deal with illnesses that don't seem to be going well.
I am definitely all about praying for healing, and about being at peace with your brothers and sisters and asking for forgiveness when appropriate, but I also hold a pretty high regard for medicine. I have been here for 9 years and I am still learning how to do this better, how to break down the cultural barriers and worldview, when appropriate, to help them understand disease, death and the factors that can help when someone is sick.
Pray for me to know how to do this better, to have wisdom as I talk with patients so they will have a clear understanding of what is happening and how we are trying/wanting to help. Pray for Anita and her brother, for their relationship to go on for years and years, for her to beat the odds of GBS and make it, even while at home. Pray for her parents to seek their strength in God, even when it seems like their world maybe crumbling around them.
Ps 46:1-3 "God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging."