Christmas week is always an emotionally charged week to be in the hospital for me. The peace that weaves through things, the poignancy that ordinary events have, the comfort deepened, the grief magnified. Last week was no different.
Sometimes Christmas week is quiet. Not this year. We ran from place to place with overflowing census and critically sick kids. . .some we could help, some we could not. Each day began with quiet whispers and ended with deep imploring.
Two patients bookended my week, bizarrely similar, against all odds.
The first, baby S*, came in to our neurosurgical team with a too large head, at 5 days of age. We were consulted because on day 5 her oxygen saturations started plummeting from 90 to 70 to 50. No amount of oxygen could bring it up.
I almost hoped for pneumonia, but I knew oxygen measurements this low on day five likely carried a much more fatal diagnosis. I brought down the ultrasound from the ICU and looked at her heart. Necessity has made me desperate to get images I can send to Dr. Romp in the states to get a preliminary diagnosis in real time, to help make decisions with these families.
2 chambers. Not four. No vessel leading from the heart to the lungs. The vessel that had kept her alive in the womb was closing, and we were out of the medicine to keep it open.
This precious girl fought every step of the way, protesting our IV sticks, begging for milk, batting away my hand as I tried to obtain the critical images of her heart. And Christmas eve morning I sat with her dad, her aunts in hijabs, and spoke on the phone to the mom in critical condition for eclampsia in a hospital hours away.
What does she need? Emergency surgery.
Can we do it? Not in Kenya. Not in East Africa.
What does that mean?
I struggled to say the words. In a world where the surgeries exist, in a hospital where we defy odds every day, I had nothing medically to offer. All my training says to say the words “she is dying” when necessary – but they always catch in my throat.
The father nodded, sadly. “Thank you. Thank you for your care of her. We have watched you fight for her,” he said with humbling sincerity.
We confirmed the echo later that day, sat with the family again, and they took their precious one home. (The visiting cardiologist also did 10 other echoes of the heart that day, 9 of them abnormal, 2 more needing surgery)
The day after Christmas, I was called to the ER (Casualty) for another 5 day old, this one a boy. Same big head, referred to us for water on the brain. But this baby was breathing fast and we could not get the saturations to register on our monitor. Assuming equipment failure, we tried 2 more – all read 10-30% with a normal heart rate. Surely, they were wrong. I arranged a nursery bed, certain that was not possible. I intubated little A* and gave oxygen, but the number did not change. The wonderful nursery nurses and I watched the screen in disbelief.
“No. Not twice in one week,” I begged.
I rolled down the echo machine from ICU again, distinctly aware of the feeling of de ja vu.
The inside of the heart looked fine, but the outlet looked very wrong. 2 cardiologists wrote back after I sent them the video.
Transposition of the great vessels. The lungs connect to the lungs and the body connects to the body. No blood with oxygen is getting to the body or brain. The oxygen levels of 30% were real.
These parents came to us for help for the head, and we found insurmountable obstacles with the heart.
And so the conversation began again. . .
Kenyan medicine is moving forward a break neck speed. I work with incredible Kenyan colleagues and trainees that are pushing it daily. But these babies – the ones where I would call cardiology, admit to the cardiac ICU, get their emergency surgeries and critical drugs and – after much prayer and expertise – hope to send home to run and play. These babies, for right now, I sit with the families and cry.
For them to get surgery, they have to have otherwise perfect bodies (making the hydrocephalus a huge barrier). Then, the family has to raise $1 million Kenyan shillings (about $10,000) just to start the approval process and fly to India for evaluation. We have 2 pediatric cardiologists in the country. Our pediatric surgeons have learned to do one of the surgeries out of necessity, but not the ones these babies needed. Few families are able to even start the process, and the ones who do race against the clock.
Congenital heart disease is a death sentence here.
We don’t only need a skilled surgeon, we need the infrastructure and the entire community of dedicated and specifically trained nurses and therapists and pharmacists and doctors and practitioners.
And, so, we train. My friend and colleague Mardi and I, two of three pediatric emergency medicine physicians in East Africa, are working with the University of Nairobi to start a Fellowship in Pediatric Emergency and Critical Care. Our adult ICU department has just graduated the first class of Emergency and Critical Care Clinical Officers to improve our critical response time and the pediatrics department worked hard with them to add the care of the smallest patients to their curriculum. The first program to train critical care nurses has started in Kenya, and we are working to send our nurses their to come back and train ours here. Kijabe has 5 of the 74 ICU beds in the entire country of Kenya, with 3 under construction specifically for kids and 31 new ones set to open in 2017.
I think the finality of this diagnosis will change in my time in Kenya, and I hope to have a small part of it. This week was draining. I wrote my colleagues when I got little A*’s diagnosis, hoping they would have the solution that I knew did not yet exist.
At the same time, however, these precious babies solidified why we are here – why what we are doing is important. They reminded me in force why I am grateful for the team of doctors and nurses that walk beside me every day and the one’s across the ocean that cover us with prayer and answer desperate emails during a holiday week.