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.

Muscular Dystropy Conference/Joytown

On Friday, I had the extraordinary opportunity to go to Joytown which is a boarding school for children with disabilities (everyone goes to boarding school here so this is NOT to be confused with the institutions in E. Europe).  I went with Mercy the pediatric chaplain, who is Kenyan and probably my favorite mentor here.  Her two daughters (in their 20s) and grandson (14 mons old) came as well.  We hired a car and drove from Kijabe to Thika, a town about 1.5 hours east.  We were to be part of a seminar (conference) for families with children at the school with muscular dystrophy which I find to be a subtlety ironic reoccurring theme in my life*. 

The drive reminded me of all the things I fell in love with about Kenya the first time: the people the red, rutted roads, the Ascasia trees, the flowers, the women in bright colored kangas, the colorful booths and shops stuffed in every little village no matter how small or how run-down, the women with their wares spread out over a kanga on the side of the road, the mist burning off the mountains so similar to my own beloved mts at home, the men with bicycles piled high with heavy loads, the motorcycles with four people on somehow (the ED doc in me shudders a bit),  the children in their bright school uniforms waving and yes even the crazy mario-kart esque driving.  Mercy says that I am not very American.  She and her family call me “Wageri” (I think that is how it is spelled) which means (or so they tell me) “Mother of a Clan”:  Implying that I am really apparently a Kenyan who will start a new clan.  I took this as a compliment. 

The school was set up with dorms, several class room buildings, a small performance hall/chapel, a dining hall/kitchen, a gym for sport and therapy and a swimming pool (for hydrotherapy)!  It was FAIRLY accessible by wheelchair. The rutted, rocky roads were not great although my Kenyan students put me to shame doing wheelies over the whole thing.  Most of the children are on Easter holiday (the whole month of April) but some where there to be part of a camp to start next week, to go on a field trip to play wheelchair volleyball on the coast or for the conference we were speaking at. 

We were greeted and pulled quickly into the performance hall where the parents and students were already waiting. After an elaborate set of introductions and greetings, Mercy spoke to the families. We then had a chai (tea) break. I of course had not been part of the program but was quickly told/asked/expected to talk.  Since my Swahili is currently at the level of an 18 mo, I had an interrupter. His name was Kelvin, he is an occupational therapist and a bit of a clown, he teased me about being a fast talking American. He was wearing an OBAMA 2008 shirt and told me proudly he was Luo (the tribe of Obama’s Dad).  I told him Obama talked fast too, he laughed. We were fast friends. I told them about my life growing up with Kniest, the surgeries, various spiritual and life milestones. The parents had lots of questions.  A few were medical (an ortho (in fact the same ortho who looked at my knee) had been there the day before), a few were about how my family thought me but what we spent 40 mins talking about was  if I thought I was cursed or not.  Thank God, Thank God I was a religion major and did my honors work on that very issue because medical school totally did not prepare me this vital, question that ALWAYS comes up in global child health even if I never mention my own life experiences. This was the first time though I ever been asked that question bluntly in a public forum as a doctor (seen as a figure of great authority in the culture I am in).

The families were really receptive and I was really touched by how quickly they accepted me as one of their own.  It will never cease to amaze me how quickly being disabled can transcend all cultural boundaries.  Even though I have chosen NOT to do PMR or developmental peds (because the actual medicine bores me), I know this will continue to be part of what I do when I grow up and become a Peds EM/Global Health Doc/Nomad for Jesus/Mother of a Clan.

We had lunch. I got to know some of the kids which was awesome. They were articulate and fun. I also got to know a young Kenyan woman who was 8 mons pregnant with CP and several of the PTs/OTs. In the afternoon, Mercy insisted I go with her to counsel the mothers who wished to speak to her. Most of it was in Swahili which means I understood a lot of pronouns, numbers, colors and yes/no. Mercy took notes though and would show me them. Several of them brought concerns you would expect either they had been left by their spouses because of their sick child or had great financial hardship because of their sick child.  Several though came in strictly to ask about circumcision which I thought was really interesting. It is a typically a rite of passage when boys reach manhood. Some Kenyans will do it in the hospital these days.  The moms wanted me to tell them if I thought letting their son get circumcised would affect their MD.   I initially was somewhat flustered by this. I finally went strictly medical which was they could bring their child to the hospital have them looked at by our anesthesiologist and if they thought their lungs and heart were ok, we could probably do it.  (which seemed the culturally correct response despite my reservations for the poor teenage boys). We prayed with them (especially the ones with non-circumcision complaints) and referred several to a child sponsorship program who can help with medical financial woes. Meanwhile, one student and two Moms became Christians because of the conference (Kenya is a very religious country and having a revival and a support group meeting at the same time may seem odd to my American colleagues but is quite acceptable here. In fact there is very little separation between medicine and the spiritual aspect of people lives here people think of them as being connected…which I think has pros/cons and is a topic I can expand on a while later).  

I loved it. It was an amazing day. I was completely exhausted by the time we left. We stopped at a big supermarket in Thika and stocked up on CHEESE (!!!), laundry detergent, mangoes (always need more) and various other sundry items. I came home and slept for 11 hours.  

*For those of you who have not been following my global health adventures from the beginning…way back in 2004 I went to Bucharest, Romania for the first time. My mentor that summer was a young woman named Laura who was 28 and had a form of muscular dystrophy.  She was a brilliant, writer, activist for our tribe (disabled people).  She passed away Sept 23, 2004  about two months after I left Romania.  It was very hard on me and I struggled with the meaning of her death for a long time.  I had a little bit of a relapse when the first pediatric patient who ever died on my watch was a 18 yo with MD during my AI as a 4^th year medical student. 

work, work, work a little bit of PLAY

 SO everyone told me to stay home with the knee, but we all know I am NOT good at staying home. So I went on crutches and found people to drive me up and down the hill.

Work is busy and a little odd. 

The pathology here is as expected, phenomenal.  We have a visiting peds surgeon who is here for a year who has done some crazy cases this past two weeks: omphalocele, congential diaphragmatic hernia and trachea-esophageal fistula. On the peds ward we have a nephrotic syndrome, a refeeding syndrome (from a prolonged complicated appendicitis that turned into peritonitis after appendectomy an another facility) and various pneumonia and bronchiolitis.  In the nursery/NICU we have THREE cases of direct hyperbilirubeminia which is bizarre (most babies with jaundice have indirect). One kid came in with a total bili of 35 and direct of 24. We ended up doing an emergency exchange transfusion. I manually did the procedure under the guidance of my FMG colleague (an excellent example of something I have NEVER done in my ritzy American education). The repeat bili was 24 with an indirect of a 13 and continues to trend down. The AAP/WHO recommendations for direct hyperbili are vague and there is very little evidence of what actually helps beyond if you can find a metabolic disease you can treat it.  But it says you can try exchange transfusion as a last ditch efforts.  I have spent most of my time in the nursery this week partly because we are short a Kenyan resident and partly because it’s a good place to be if walking is a problem because its small. 

The odd part...There is a FMG (foreign med grad) physician (not Kenyan) who graduated from medical school four years ago elsewhere and has been working in pediatrics since then informally at various mission hospitals around the world.  Its hard because its unclear who is Sr to who and everyone is fawning over my education (all 8 mons of it) but he knows way more than I do especially about how things work in this kind of setting.  To make matters more awkward he desperately wanted to get a spot at the program where I am in the states and every day asks me about it. He applied and was turned down for an interview (which really is a shame because he is great doc and  we take 3 FMGs a year).  He keeps asking me about making connections and such.  I of course have little to NO power and he has already accepted an offer from a community pediatrics program elsewhere and the Match is over and done with. Its hard. I am not exactly sure how to handle it. I appreciate prayers and thoughts. 

I did on Thursday after the knee had started to mend start my growth chart project so hopefully we can get that going. I did have a minor setback. The peds surgery ward is trying to get a scale donated and until then there is a very little I can do about daily weights. So I am focusing on general peds and then the outpatient clinics for now.  Having been here before is a HUGE advantage because the nurses all know me and were not hard to convince to participate in the project. So far, so good.

Monday night before I HURT my knee I went to two parties. One was for all the new residents/students run by several of the full time Western Staff and the other was a surprise party for my Kenyan friend. The surprise party was particularly fun and I had such a good time catching up with everyone and of course Kenyan chai, cake and music.  On Thurs night I went to a Kenyan worship service led by two of the pediatric C/Os (PAs).  I was the only white person there (this happens to me a lot and I often wonder what all the other white people do all the time…especially the young people without kids…I have no idea!). It was a great time the music was half Swahili which I understood some of and half english (with a lot of Hillsong!).  There was the obligatory dancing which I did some of despite my knee.   

My poor, poor knee

So Work Day 2 I sprained my right knee.  Initially it was unclear rather it was a sprain which resulted in several hours of tears and intense anxiety that I would be sent home on an airplane.

I fell in the darkened hallway between maternity and nursery. The floor was wet but hard to see because of the lighting.  I was found by my sweet Kenyan friend Lois who works in maternity who brought me a wheelchair.  Initially we really did not know what I was to do. I called my neighbor who has been playing hostess to me. She told me to go the Private clinic, a place I did not know existed. I waited in the waiting room, fighting tears of the thought of having a patella fracture and having to go home, watching my knee swell up rapidly. I managed to hold it together long enough to get a x-ray which I was pushed to the front of the line for and waited for over 2 hours for an orthopedist consult.  Lois stayed with me the whole time despite being on duty and me being somewhat of a basket case.  My neighbor showed up briefly and then left which I thought was a testament to how wonderful my Kenyan friends are.  I was very grateful for the company. I took a preliminary read and was relieved to see no transverse fracture but there was a small indention on my patella that I wasn’t sure about. 

The orthopedist finally got out of theater took one look at me and I said, “Um before you look at that film we should talk.”  He said, “Yes I have seen you around and seen the scars on your legs, we need to talk.” He found a private exam room (miraculous) and I of course gave him the 120 sec version of my life story.  He looked at the film and agreed with me that there was no real fracture, the mark on my patella could be new or it could have been there forever.  The fact I still had excellent flexion and nearly full extension leaned toward not a fracture. It wasn’t unstable and had negative signs for ligament tears. He told me to go home on crutches, ice it and see how it looked in a few days. If it got better, it was probably a strain on a ligament or bad bone bruise in the context of my terrible arthritis which was probably leading to the impressive swelling. I actually thought this was reasonable because I could bear weight reasonably. It just looked awful. The pain got worse that night but improved dramatically the next day.  

It has slowly improved since then I am off crutches around the house and one crutch out in the world.  The ortho and mine current conclusion is I have a partial tear in my patella tendon. We know its not total because my patella is still in the right spot (not mobile) but my pain now is confined to extension at the site of the patella tendon). This should heal slowly with rest. Pray it continues to heal!!!!!! It has kept me from getting to go up and do as much especially at work. 

Greetings

One of my favorite Kenyan customs is how they greet visitors in church. It would never work in America in our individualistic and easily embarrassed culture, it would not work well for church planting. But this is our loss.  What happens is at some point in the service, the pastor/elder asks if there are any visitors. You are expected to stand up, introduce yourself, explain your purpose and bring greetings from the church you come from.  So I said "Good Morning Church (how one address the congregation), My name is Amy Long, I bring Greetings from Christ the King Church in Cincinnati Ohio. I am a pediatric registrar (British term for resident) working at the hospital for a month."  In theory you are supposed to bring specific messages or blessings from where you come from. My greetings are still a work in the progress. It makes me smile thinking of my church plant in Ohio greeting a church in Kenya. We worship differently, we speak different languages but we are united under one faith, one body, one Christ.

The idea as it was explained to me in my cultural orientation last year is in the communal Kenyan culture, there is a huge emphasis on where you are from and your people opposed to what you do which tends to be what we care about in the States.  Thus in Kenyan theology, there is a huge emphasis on the body of Christ.   Paul brought greetings in his letters, the Kenyans have a very biblical model of thinking about church, better than ours. In Paul's day, the letters and the greetings encouraged the believers by knowing  and learning from the struggles and victories of other fledgling Christian communities. The church is a living, breathing organism not a gathering of people or a building in Kenyan culture. The church is a plural,encompassing term that crosses borders both political and social.  I am referred to as sister even though I am biologically from a tribe far, far away. I am accepted as a member of this branch of the body and my greetings are a blessing, a reminder that what we are is so much bigger than what we see.

I wonder what would happen if we started doing this in the States.  What if we put aside our denominational squabbles, racial, economical differences and were willing to bring greetings to other branches of the body.  .What if the suburban churches sent visitors to the inner city and rural churches and vice-a-versus, what we would learn from each other?  What would happen if I went to high Mass at one of the cathedrals down town and said, I bring greetings from my evangelical inner city church plant? What would happen, what would we learn? What would God do if we silly American Christians woke up to the reality of how big Christianity is? 

Can't Sit Still

I have arrived safely in Kijabe.Its beautiful. All the bright colors of Kenya, the friendliness  of its people delight me. Many of the shopkeepers and towns people remember me and stopped me in the street to catch up! I ran into to several older couples I knew and Mercy, the pediatric chaplain who I adore. Mercy was particularly pleased to see me, as was Dr. Albirght to whom I brought 23 kilos of neurosurgical supplies and a laptop. 

My housing is different than expected. I am up in the sitaplex, a very modern, very spacious apartment building opposed to the boarding house like place I lived last time. Its very nice...like nearly nicer than my apartment in OHIO.  I find it lonely though although am trying very hard NOT to complain. Last time I had Kenyan house mates who shared meals with me and we played games and hung out every evening.  I found myself staring at the walls after unpacking, going to the store and going for a long walk around the hospital and grounds. My former Kenyan housemates sent me happy text messages but are all visiting friends in Nairobi.

My restlessness/loneliness is a symptom of free time. I do not know what to do with free time because I have had so little the last 9 months. I took a long walk up the hill a bit to one of my favorite spots where you can see the Great Rift Valley spread beneath you. Its beautifully green with the rainy season under way. I forced myself to sit on top of the hill and just try to enjoy being still, being quiet. I think perhaps being an intern at such a competitive (although wonderful) program has stressed me out subconsciously more than I ever realized until I had three days of in a row to travel half way around the world and ponder how stressed I am.

I walked through the peds ward this afternoon, its bursting. There are beds everywhere, multiple patients and parents in the beds and lots of anxious and discharged looking parents. More kids than I ever saw last time admitted at one time.  I think once Monday comes I won't have time to ponder life or be lonely because I will be so busy.  So I need to savor and be still and live the dream.

Live from London

I heart London Heathrow! I know the rest of the world hates it but I seriously love it. Even the adrenaline rush that comes from not getting your gate announced till 20 mins before it closes makes me smile and remember all the crazy mad dashes over the years.  Its funny the first time I "crossed the pond" at 19, it seemed to take FOREVER, now its a hop skip and a jump it seems till I am landing in London.  I do miss Emily (my sister) who was with me on my first trip through London when we managed violin, wheelchair and medical supplies in a mad dash that was said to take a minimal of 20 mins and we had 10.

So far the plane travel has been fine, I am carrying two computers one to be donated to the hospital in Kenya so every security checkpoint (I am up to my fourth) takes 20 mins to get the wheelchair and all my extra stuff through.  I am of course back in Europe where traveling alone by wheelchair to A F R I C A no less is slightly less odd than having a pet dragon in a crate in your hand luggage. The staring gets worse when they start pulling out my reflex hammer shaped like a giraffe, my stethoscope and a bible...yes I am a gimpy doctor on my way to KENYA,  keep staring I might do a trick.

I did try to find the last book in Emily and my current British obsession (also slowly  infecting the intern class) the CHERUB series (its HARRY POTTER MEETS JAMES BOND). Currently not available in the US but no luck so far.

Its 3 AM according to my body's clock. I have found the most wonderful thing about 30 hours calls, I am completely not jet lagged just pleasantly surprised no one is coding or paging me because some kid is PEWING a 7. I did have a panic moment though when they woke me up to feed me a soggy muffin and tea before we landed where I wanted to say THIS IS AMY WITH CARDIOLOGY...I mean, "Tea please"

I left my pager on my kitchen table. I feel so wonderfully liberated. Don't get too excited for me I will inherit the Kenyan delivery pager in T-minus 48 hours. :) 

But for now I am going to enjoy the pager free life, the people watching and the British accents and some pre-teen literature searching.  Cheerio.

PS my excellent Kenyan friends have finally helped me correctly SPELL my nickname sense there is no Kikuyu dictionary online. Its N Y A W E R A. I was close but apparently still miserably AMERICAN, alas we all know I can't spell in any language anyway so that is a small comfort.