COTW: Cyanotic Heart Disease

The baby was brought into the NICU by his mom on his second day of life. He had been born at some other facility, and was now having a terrible time breathing.

The oxygen saturations (which should be easily over 90%) were about 30%, and so we grabbed an oxygen mask and a bag, and began pumping air into the baby's lungs. The levels never rose above 60%. A tube was placed down into the trachea, and we focused the air into the lungs. No progress.

We listened to his heart, and there was a loud murmur. The combination of these findings suggested cyanotic heart disease, one of a number of heart deformities where the plumbing is messed up in a way that the blood from the heart and the air in the lungs don't meet up with each other properly. A chest x-ray in another hour showed an abnormally huge heart, consistent with this diagnosis.

In the US, a child like this gets immediate infusion of a medicine to keep the pre-birth heart plumbing open, and then is taken soon to corrective surgery. It's not all fun and games for those kids from then on out, but they live. At least, that's how I gather it's done in the US. I didn't actually get any practical training in it myself.

Here we don't have that medicine. So we just hope that the pre-birth plumbing stays open, keeping the kid alive. And surgery... Well, in Nairobi, the extremely wealthy can sell all and maybe get a corrective surgery. And Tenwek has a pediatric cardiac surgery team that comes out once a year and does a few cases. It's an amazing work, but the candidates for surgery far outstrip the work they can do. Plus, that's several months away, and the family has to get there first.

A conversation ensued, and mom and dad cried as it came home that their baby was unlikely to survive. They were trying to decide whether to sell the farm to chase a one-in-a-million chance of saving their baby. We prayed. The nurse called the chaplain. I wrote the "do not resuscitate" order.

Surprisingly, in the morning, the baby was still there. Mom wanted to know if she should try and produce breastmilk. I said yes as much out of pity as anything. We managed to get an ultrasound of the heart, which confirmed a type of heart disease known as "tricuspid atresia". A few more days, and we started to put some of that milk in a tube through the nose. A couple more days, and the child was breastfeeding without difficulty. The oxygen saturations were still incredibly low in the 60's, but the baby looked OK. We weaned off the oxygen, and the baby's numbers and condition were just the same.

So, we arranged for the parents to take their little baby home, with a detailed note from me to take to a Nairobi specialist on their own, without bankrupting their family to pay for an ambulance transport.

Mom is sitting there on a stool, holding her little boy and smiling at him. She and I both know that he's unlikely to live very long. But this small grace is theirs, this moment for them together. This moment that I certainly didn't think would be theirs. This trip home to see his family. How many more will there be? I wouldn't think many, but I didn't think this one would be there either.


Timothy said...

Makes me cry...Mom

Jean said...

Yes, me too.

Jean said...

Yes, me too.

Uttz Family said...

Its hard to think of those situations especially when you are a parent and can feel their pain so strong....praying they have more moments with this precious little one than they could have imagined. Mariah