The Baby with Congenital Heart Disease

On Friday as we were getting ready to leave the clinic we got called into the Emergency Department (I am always grateful when they do that, because it shows their willingness to take our advice and be open to some of the teaching we can give them). There was a 2 month old baby named Yelsi, in there who had already been hospitalized in the past with pneumonia. The baby had respiratory distress and they weren't too sure what to do about it.

This baby was tiny. Had actually lost weight from her birthweight. She was sweaty and breathing rapidly and shallowly. She had an incredible heart murmur that could be heard everywhere - her chest, her back, practically her feet. You could feel it vibrate beneath her chest. Her liver was enlarged, she had large veins in her neck (JVD), and her lungs sounded very wet.

Essentially this baby has congenital heart disease, causing fluid to back up into her lungs, liver and veins. Her murmur was undeniable. Mom confirmed that she would sweat profusely anytime she cried or ate, which is a clear sign of someone whose heart has to work overtime to do everyday activities.

She hadn't been gaining weight because she had been working so hard and needed extra calories to help her grow.

In the States she would have likely been prenatally diagnosed, or at very least diagnosed at birth. She would have been started on medicine to help support her heart and remove excess water from her lungs and body. She would have been placed on a high calorie formula so that she could gain weight until her surgery. And yes, she would have likely had corrective surgery.

Here, she just slipped through the cracks. The pneumonia she was diagnosed with was likely just signs of heart failure that yet again went misdiagnosed. The fact that she is 2 months old is a good sign - maybe the heart lesion isn't so severe...but the fact that she is showing signs of heart failure is not such a good sign.

There is no ability to perform an echocardiogram on the island. There are no pediatric cardiologists (I'm not sure if there are any cardiologists). We tried to do an ultrasound of her heart, but it was difficult to pick out all of the chambers and the doppler wasn't working. We recommended giving her a dose of a diuretic and transferring her as soon as possible to a place that could do an echo and had a pediatric cardiologist.

The hospital doesn't pay for such transfers, and mom doesn't have any money, so luckily the organization that I am working with was able to set aside enough money for: taxi to the ferry station, ferry to the mainland, taxi to the bus station, bus to the larger city with the pediatric cardiologist, and then pay for the echocardiogram at the private hospital. Crazy.

The baby did much better after the diuretic, but she had a very persistent cough. She and mom were actually on the ferry with me over to the mainland. I sat next to them and watched the baby bob her head with each breath as she slept and flare her little nostrils - signs that even while asleep she was working pretty hard to breath.

I watched her and prayed that she would be able to make it to the hospital and then get the help that she needed.

I last spoke to the mom on Sunday - she had been admitted to the Public Hospital, but hadn't seen a doctor yet and didn't know when she would get the echocardiogram. I asked her to please get the phone number of her doctor so that I could call them and find out what was being done for little Yelsi. I feel fortunate that we were there to look at Yelsi and give our opinions, but at the same time I am frightened for all of those patients who don't get that chance.