Cost of Having a Heart Defect in Africa

My first day in the hospital at Mbingo, I was consulted on a fullterm twin in the newborn nursery that required oxygen at birth and then was unable to wean off.  He had been feeding and growing well, didn't have any signs of heart failure or heart murmurs and all of his pulses were normal.  But as soon as you took him off oxygen, his saturations slowly decreased.  The question was lungs or heart?  We ordered a chest Xray and 3 days later it was performed and showed a normal sized heart.  An ECHO (ultrasound) of the heart was ordered but up until now has not been done.  Since he looked so well and without other signs of the heart being the cause of his oxygen requirement, we thought he had persistent pulmonary hypertension but expected that by now, on day of life 10, he would be off oxygen and home.  I spoke to one of the residents and asked what would happen if there was a heart defect.  His said that those children are sent 7 hours away to a hospital in Yaounde, Cameroon where they can sometimes do heart surgery, but that it was expensive and most families can't afford the cost.  I asked what happens if they can't pay to go to Yaounde?  He said, then we take them off oxygen and send them home.

As a mother, how do you make that decision?  Continue to give the brand new infant you brought into the world the oxygen or surgery they need and risk having the rest of your family starve.  Or take them off oxygen and bring your infant home unsure if they will live or die.  As a doctor, how do you make that decision?  You've entered a field where at the minimum, you work to "do no harm" and strive to help your patients each day.  But is the harm to the individual more or less important than the harm to the whole family?  This morning, the midwife decided to take him completely off oxygen and see how he will do.  I'm not sure the mother even got to make that decision.

Everyday I visit this mother and ask if the babies have names yet.  Everyday she answers, "no, not yet".  One of the midwives explained that people wait many weeks to name their children because names are very important.  Lots of family members give input and want the child named after their deceased relatives as a reminder.  The mothers get lots of suggestions and then decide which name is best.  I wonder if they really wait to see if their child will live or die before working so hard to choose their valued name.