The Cost of a Life in Africa

Azaelle has sickle cell disease, meaning his red blood cells have a genetic defect that causes them to be sickle shaped instead of round.  The sickled cells can get stuck in small blood vessels and rupture causing anemia, pain, lung problems, strokes, infarctions of bone and lots of other complications.  Azaelle was admitted with a pain crisis in his foot, had been improving and we almost discharged him over the weekend.  When we rounded yesterday, he was requiring oxygen, was very sleepy and looked terrible.  I was very worried about him.  He didn’t have pneumonia or another pulmonary problem to explain his oxygen requirement.  He had a loud murmur and I was concerned his hemoglobin (part of the red blood cell that carries oxygen) was low.  That could explain his oxygen requirement and he would need a transfusion. 

Azaelle is here with his Uncle.  His mother is pregnant and unable to travel the long distance to Mbingo, and his father works far away.  As I was trying to figure out why Azaelle needed oxygen and what to do about it, his Uncle demanded to be discharged.  He said he only had 9000 francs and the hospital bill was already 8300 francs and he could not afford another night.  Everyone treated at Mbingo must pay their bill before they leave.  There are many people that sit around the hospital grounds for weeks waiting for family members to bring more money for their bill.  He said that he had to be at his job tomorrow otherwise he would be fired.  The nurses, residents and I worked all day to explain why his nephew was so sick and needed to stay in the hospital to get care.  When we took him off oxygen he dropped to 68% oxygen saturation and had trouble breathing.  I wanted to scream “look at him, don’t you understand?”  He wasn’t even the child’s parent, what gave him the right to choose to take him out of the hospital and risk his life.  But there was no way he would change his mind; he had to go now.  

Many times during the day the nurses threw up their hands and asked me to write an order to discharge the child against medical advice.  I refused.  The child would die if he left.  I didn’t think there was a choice, he wasn’t going to leave and I certainly wasn’t going to write an order saying that he could.  Even if the order said I explained the risks and benefits and they were leaving on their own will.  I tried to be empathetic to the situation.  Having no money to pay the bill and then loosing your job is a terrible situation.  But loosing a child has to be worse.

I enlisted the help of the chaplains and don’t know if they were the ones that talked him out of leaving, or if we argued so long that there wasn’t enough light in the day to travel.  Either way they stayed, and almost 12 hours later, I was finally able to get the hemoblobin level I wanted.   The hemoglobin had dropped from 6.9 three days ago to 4 (normal levels would would be above 12, but many sickle cell patients live at 10).   We gave Azaelle a blood transfusion and this morning he was much improved.  The family is still here because when you receive a blood transfusion at Mbingo, the family must donate blood to replenish the hospital's supply.  The Uncle is not willing or unable to donate blood and they are waiting for a family member to come and give their blood.  I’m just happy that it bought me some time to care for Azaelle. 

There have been many times I haven’t been able to care for a patient the way I would want to; the way I would in the US.  I have had to find ways to work within the system with the resources available.  This is one time I chose to stand my ground on something I believed strongly about.  I have been unable to save or help many children here in Mbingo, but I knew I could help this child and would not make the decision to let him leave.  I wondered if I had made the wrong decision – if the family would be in debt and loose their jobs for my choice.  One of the chaplains who helped talk to the Uncle yesterday stopped me as I walked to dinner tonight and reaffirmed the choice I made.  He said that he was so grateful for doctors who cared enough about a child in Africa to make a hard decision and fight for them to get the care they needed.  I won't always be able to fight for the children I take care of.  Some will be too sick or we won't have the resources available to help them.  But I know that I did the most that I could do for this child and I hope that his Uncle will one day understand.