J. M. is a 7 year old boy who presented to clinic in respiratory distress. He was breathing 60 times a minute and his peripheral oxygen saturation was 84%. He was agitated and panicked. He had crackles on lung exam which can indicate fluid in the lungs known as pulmonary edema. He also had a distended abdomen and edema in his legs. His mom stated that he had been sick for a week with a distended abdomen but had been breathing normal until today. The patient was placed on oxygen and his oxygen saturation improved to 94%- which was better than 84%, but not terribly reassuring. His heart rate was increased, but his cardiac exam was otherwise normal. His liver was not enlarged on abdominal exam. Labs revealed a creatinine of 23.9, which is extremely elevated and indicates severe kidney failure. J.M.’s mom said that he had not urinated for several days. His kidneys were not working and he was volume overloaded with fluid in his lungs, abdomen and subcutaneous tissues. He needed dialysis urgently. Dialysis is available in Haiti, but is difficult to coordinate in an emergency. His blood sugar was 540. I assume that he had new onset type 1 diabetes resulting in high blood sugar and related polyuria which caused dehydration. He could also be in diabetic keto acidosis which can cause acute kidney failure.

J.M. is from a mountain village quite a distance away. Some other people from his village had also traveled to Cazale to be seen in clinic. These people told us that J.M. had been sick for a number of weeks but that his mom had been taking him to a voodoo priest and not to a medical clinic. Some of the voodoo remedies can be toxic to the kidneys.

J.M. needed to be transported to a hospital immediately and start dialysis and be analyzed for keto acidosis and receive appropriate treatment. He would not be able to take usual transportation via motorcycle and tap tap. There are multiple ambulance services in Haiti, but they do not come out to Cazale easily. I called one of these services to see if they would meet us at the end of the Cazale road- where the paved road starts. The ambulance service said no problem. The ambulance service helped to coordinate care with the receiving hospital and a nephrologist- seemed too good to be true. Then the patient’s mom said she wouldn’t go. She wanted to leave and go back to her village and the voodoo priest. She said she wanted me to give her son a pill to make him better and that she would not go to a hospital. The clinic chaplain, multiple nurses, myself, Licia and Casey all pleaded with the patient’s mother and explained that the patient would likely die without dialysis. She relented. Casey drove the patient, on portable oxygen, and his mother and one of our nurses towards Port au Prince until they met up with the ambulance. The patient was transferred to the ambulance. Unfortunately, he required intubation for worsening respiratory failure prior to arrival at the hospital. And unfortunately again, only a few hospitals in Haiti can manage patients on ventilators and the hospital he was destined for was not one of these hospitals. Therefore, the destination hospital changed. The hospital did not have a dialysis catheter. Myself and the ambulance system called multiple other hospitals to see if they could help- no one had a catheter. The catheter was purchased and flown in from Miami yesterday. But later on that day, I learned that the patient’s mother left with her son against medical advice prior to receiving dialysis. The patient was on a ventilator and receiving oxygen and treatment for hyperglycemia and hyperkalemia. I cannot imagine that he will live long without these life sustaining treatments. So sad and so frustrating. It seemed like everyone was fighting to save this child. There was teamwork across organizations to beat the odds and provide medical care that was desperately. Getting the patient safely to the hospital that had the ability to deliver life sustaining treatment was a great victory. But it wasn’t enough. J.M.’s mother has the legal right to make the decision that she did. However, I am not at all sure that she understood the consequences of her decision.

Please pray for us that God will give us wisdom and guidance when providing education for patients and their family members regarding medical treatment, especially when families prefer voodoo medicine. It’s a touchy subject but also a great opportunity to share the gospel.