How to Pray for a baby on ECMO while in Africa....

I have been terrible about updating. I have just been so busy from sun up to sun down.

First all, I interrupt this African journaling to mention a momentous event in the life of some friends from North Carolina. Their daughter was born with a congenital diaphragmatic hernia (CDH) three weeks ago, she survived the surgery and today she got off ECMO after being told last week it might not go that way and I admit to telling my own family a week ago that I didn't think it was going to go this way. :)  I am thrilled for them as I am thrilled for all my dear mentors and friends who are their doctors.  I am entirely happy to eat my own skeptical, callous doctor words and accept a minor miracle. I am planning on smuggling myself into the NICU when I am there in NC in May to meet this wonderful, resilient young lady. (I have mad connections and people like me down there :) ).

Its been a week of deaths for  the pediatrics team here. We lost our T-E fistula baby to cardiogenic shock due to an unknown cardiac defect (we knew it was there but have no ECHO and no CT Surgeons). We lost our CDH and omphaloceale baby to a wound infection. Then on Wed I diagnosed a baby with NEONATAL/Congenital LEUKEMIA.  He had a white count of 80,000 thousand, a smear full of blasts. I had repeated his CBC from Tuesday thinking it was a lab error only to get a call from pathology telling me about the blasts. I went and saw them with my own eyes. 32 days old and has leukemia. The prognosis is terrible no matter where you are, we transferred him to Nairobi knowing that he will most likely be gone within a few months. And they just kept coming....On Tuesday, the neurosurgery team asked us to take a baby with inoperable hydrocephalus because Mom had passed out in the clinic and was hemorrhaging and being admitted to OB.  The Baby has a HC of 62 cm.  She is entirely palliative, I put her on scheduled Tylenol, feeds (because Mom was insistent) and every day instead of pre-rounding on her I spend five minutes holding her.  Then there was my perfect term baby with a nasty sounding murmur who I can't get off CPAP. I begged and pleaded and convinced a team mate to go with him in the ambulance so he could get an ECHO (first ever CPAP transport in hospital history). He has a VSD/ASD and mild pulmonic stenosis

Here is the interesting thing about death here, it happens.  But you don't talk about it. Its Taboo. There is always hope, there is always room for a miracle.  In fact I have seen again and again us try to send palliative cases home only to have them return or go to another hospital.  On the one hand I so greatly admire the faith of my families here. Their faith entirely lacks my years of North American realism and skepticism  brainwashing. They know how to pray for babies on the brink of dying better than I do despite all my training both in medicine and ministry.  But on the other hand I just don't know what to say sometimes because when they look me in the eye and say "Doctori, how is my baby doing?"  I try to tell them the truth and they tell me they will pray that its not true, that their baby doesn't have a hole in his heart or that the continuous seizures that took us  hours to stop and the baby now won't wake up, that he will be fine and grow up and be a  developmentally normal child.  And some times I stand there with tears in my eyes, wanting so badly to believe.

The CDH/omphoceale baby was from a Sudanese refugee camp on the remote Northern border of Kenya. No one speaks her language, we could never find an interrupter despite days of trying. He died early on Tues AM. I went to the ICU and he was already gone. I saw the Mom several hours later.  We had a brief but profound silent conversation, where I told her how heart broken for what she had lost and she told me how grateful she was for us for trying to save him.  We held hands for a moment. I have to say for all my family centered rounds and love for talking to families, it was by far the most moving conversation I have had my entire year as an intern.

We do extraordinary medicine here with so much less than what I am being trained with. I got called (not on call but the FP resident had never done NICU and the peds attending is on vacay so I am the pediatrician for the weekend) to the hospital this afternoon for a 29 weeker premie resuscitated to CPAP surviving in a world where surfactant costs a years wages.  The mother was at the bedside when I made it down there, stoic but broken. I asked her what the baby name was, she looked at me and said she is 29 weeks old.  I told her to look behind her at the the other incubator which held a former 27 weeker who is on RA, full feeds and growing.  I told her her daughter was doing so well and that she was alive and fighting.  We have had two spinal bifida babies who had successful repairs, we had an encephaloceale nasal mass removed, we had a former 650 baby now 3kg come back in follow up clinic.

I love the medicine we do here, this is my calling, this is why I went to medical school. We are getting better too all the time and I want to be a part of that.

But I am human and its hard to pray for a baby ECMO in Africa while you watch babies with the same diagnosis die and not weep. Its hard not wish for just a moment that I could take my congenital heart baby home in my arms and carry him to the ward I was on a mere 2 weeks ago where we saved babies with far more complicated heart defects.

 There is a  bottomless pit of injustice. Its easy to get lost in especially when you are still so rooted in both sides. This not NEW to me. I have known about for years. But I think in some ways my training OHIO has spoiled me, its such an amazing place where we do the seemingly impossible at times, the gap just got a whole lot bigger.

All you can do is celebrate the miracles, be humbled when you are proven wrong (daily) as a physician, hope with those who hope even when it seems contradictory to everything you have been taught and weep with those who weep.

And as one my colleagues told me off hand tonight as I was running NOT on call to the 29 weeker, dont forget to pray for the babies.