Final Days

Thursday was the final full day of surgery, and Friday was a half day.  Both were packed full as the surgeons tried to fit in as many of the remaining patients on the waiting list as possible.  All the residents completed one palate and two lip repairs as the lead surgeon with the credentialed Op Smile surgeon assisting, and the anesthesia residents all had the opportunity to manage general and local anesthesia and perform the various blocks under the careful supervision of the team anesthesiologists.  On the wards, the nurse trainees from Ghana were amazing.  They all work as hospital nurses in Ghana, so their general nursing skills are solid.  To be credentialed for Op Smile, they needed to learn about the special needs of post-op cleft lip and palate patients.  This includes getting oral fluids in without disrupting their sutures, managing any post-op bleeding from the palate, recognizing and treating breathing problems from airway irritation, bronchospasm or excess secretions.  Finally, they learned how to do the discharge teaching about wound care, medications and feeding, and each had a turn presenting this information to the parents.

The parents were very supportive of their young professional countrymen, cheering them on, sometimes teasing, but generally trying to make sure they were comfortable and would succeed in their credentialing.  On Friday morning, while I was signing the discharges, it was the turn of a rather soft-spoken nurse trainee to give the discharge spiel to the parents. One of the mothers took her aside and said, “You got to shout out those instructions, girl, if you want to pass.  None of that mumbly stuff you usually do.”  Though she didn’t exactly shout, the nurse did speak up enough that there were no complaints about not hearing her.

I took Thursday night late call and the last patient didn’t reach the ward until 10:00. The PI had been treating him for post-extubation bronchospasm in the recovery room for two hours, alternating albuterol and terbutaline updrafts, IV steroids and 6 liters of nasal oxygen.  He’d also given the boy Benadryl to sedate him as he had been thrashing about on the bed. Unfortunately, as sometimes happens with children, the boy had become more agitated, pulling out his IV and trying to take off his oxygen.  When he arrived on the ward, he was asleep, thanks to some clonidine.  His IV and nasal prongs were heavily taped in place and his oxygen was being weaned.  I stayed around until it was clear he was out of the woods and then left for the hotel.

Friday morning Hans, Kathy and I were on the 5:50 bus to the hospital to prepare the final patients for surgery.  I’d gotten to bed at 2:00 so was not at my most perky.   Just as we finished the pre-ops, one of the medical records volunteers brought over a four year old boy for me to screen.  His parents had driven overnight, hoping to arrive in time for their son to be evaluated.  He didn’t have any clefts, but he had never spoken, and they thought maybe a tongue tie or other minor surgical problem might be the cause.  My heart sank as I listened to their story because I’d heard it several times before on Op Smile missions.  The child was deaf, likely profoundly so.  When I asked the parents about their son’s hearing, they replied that he could hear and understand everything.  But when I asked his mother to stand behind him and call his name and ask him to tell her his sister’s name, he didn’t respond at all.  The father understood before the mother, I think because he was sitting in front of his son and saw the complete lack of response to the mother’s voice. The mother even said, “He hears fine. He just needs to see me.” She paused then and you could see her processing her own words. When they both understood that their son could only “hear” them when he was lip-reading, we talked for a while.  There are no services, no formal signing, no hearing aids or cochlear implants for this child from rural Ghana.  On the other hand, their son seems very bright and has taught himself to lip-read well enough that even at four years he understands complex directions and all his extended family thinks he can hear.  The local Op Smile coordinators and Lions Club will work with the family to see what might be available for the child.

Friday afternoon was spent packing up and getting ready for the Team Party Friday night.  Usually the team party is a big event held either in the hotel where the team is staying or a nearby hotel if needed.  Dinner is followed by the presentation of certificates and speeches thanking the local sponsors.  The photographers on the teams usually make a slide show from photos they’ve taken during the week, including as many team members as possible.  Finally, local musicians play and there is dancing into the night.  This year, everything felt different.  The surgeon’s death still hung heavy over the group, the coordinators were still absent, and the unrelenting 12 hour days had everyone exhausted.  After the dinner, most people were ready to head to bed.  Some of the younger team members did go out to a dance hall with local volunteers from the team, but I was almost asleep at the dinner table.

On Saturday morning after we discharged the Friday patients, the team would be driving back to Accra, so we had to have our bags packed and in the lobby of the hotel before we went to the hospital.  Most of us were flying out of Accra about 10:00 pm, but a few had earlier flights.  The drive to Accra takes about 5 hours, so the plan was to leave the hotel at 9:00 am.   Dr. Ampomah, the Surgical Team Leader who is from Ghana, Kathy and I went over to discharge the patients, and some of the other team members came to pack up our remaining cargo and make sure we left the wards and OR’s clean.  The final count was 157 operations - about 40-50 more than the usual mission.  No wonder everyone is exhausted.  There is however, exhilaration that goes with knowing we were able to treat so many patients and send fewer home disappointed.  The patients will stay another few days at the shelter and then Dr. Ampomah, Ella and a local nurse will do a final post-op visit before the patients are transported to their home villages.

On the way out of Ho, we had a surprise stop at the shelter. The parents and patients were waiting outside for us with a thank you banner and a celebration song and dance that went on for about 45 minutes.  It’s hard for me to describe how moving it was.  People of all ages were singing, playing bells and drums, swirling and stomping and shaking, all the while moving in a huge circle around the open space in front of the shelter.  They all had small white cloths that they twirled above their heads.  Babies bounced along on their mothers’ backs and small children danced and sang, imitating their parents.  When the dance finally wound down, everyone mingled for another half hour, parents thanking us, asking about our homes, telling about their villages.  It was overwhelming.
For most of the parents and kids who come to an Op Smile mission for evaluation, it’s the first time they have seen another child with a cleft or met another parent in their situation.  The vast majority live remotely and think their child is the only one in the world to have been struck by this catastrophe.  When they come to a mission and stay in the shelter with, in this case, almost 400 families with children with clefts, everything changes.  They see other parents and begin to see themselves as more normal and their child’s clefts as a medical problem that can be corrected rather than a curse.  The children, who by age three are covering their mouths in public, are suddenly smiling and playing with others who look like they do.  Besides the physical healing, a lot of emotional healing takes place here.

I’m going to stop now. This blog has been disorganized and I apologize for that. Much has been written from notes rather than the same day due to my computer issues, so I’m sure I lost some information and spontaneity.  However, I also don’t want to ramble on too much.  When you go to the photos, the Ho Ghana album is where I’m working on arranging side by side pre and post op photos, but there are still some in “faces” and “crowd” photos as well.
Thank you for following my adventures.

Third Day of Surgery

I’ll start with a note about photos before I resume: Because of my WIFI blackout, I was unable to upload my photos all week. I’ve now put some up but they’re not organized, particularly the pre-op and post-op ones.  As soon as I have the blogs done, I’ll get the photos arranged.  Meanwhile, feel free to view them.  Some people have said they are having problems with the link.  I’ll check on that as well.  I’m sorry for all the glitches this time around.

I promised a few words about the pediatric intensivist on yesterday’s blog entry, but it was getting too long, so I’ll start there today.  On each Op Smile mission, there is a pediatrician who evaluates all the kids at screening, looking for health issues apart from the cleft and making sure the child’s nutritional status is sufficient for surgery.  That’s not to say the surgeons and anesthesiologists aren’t paying attention to the overall health of the patients; everyone is very picky about who goes to surgery.  However, it is specifically the pediatrician’s job to make sure at screening and again the morning of surgery that each patient is healthy.  Each child is examined the morning of surgery and the pediatrician reviews the last time they ate and drank, (NPO status,) vital signs and any pre-op bloodwork.  The pre-op nurses also review NPO status and reinforce the no eating rules to the parents throughout the day.  Here in Ghana, we didn’t have a single instance of a parent trying to feed a child before surgery.  In Latin America, it’s not uncommon to find a child on the way to the OR with “just a little rice” in his mouth.  The other part of the pediatrician’s job is post-op care.  As each child returns to the ward, he is examined by the pediatrician and post-op fluid and medication orders are written.  Breast-fed babies with lip surgery can go right to the breast; bottle fed babies use a syringe or cup.  Kids who have had palate surgery also use cup or syringe for their fluids and the IV’s come out as soon as it is clear the child is drinking.  With the temperature at 98-100 degrees and 65% humidity, fluid management this week was even more important than on other missions.  Throughout the day, the pediatrician and pre-op nurses check in with the CC who is at the master schedule in the OR to see which waiting patients can be hydrated.  Patients having their surgery later in the day may have to be hydrated four or five times.

So that’s the pediatrician’s job.  Every mission also has a Pediatric Intensivist.  Since they are pretty rare – only 500 in the US – that position is sometimes filled by a pediatric anesthesiologist.  The PI’s job is immediate post-op care in the recovery room.  Kids go there directly from the OR and stay until they are awake and stable enough to come to the ward.  He also takes care of any patient who develops problems with breathing or blood pressure during or after surgery.  The PI is also the Team Leader for pediatrics and is supposed to be available to the pediatrician and ward nurses for consultation on any problems and for teaching if there are “interesting cases.”  On my 18 missions, I have been lucky enough to have had 16 wonderful PI’s.  One other time, the PI was unhelpful, condescending and generally argumentative.  The PI on this mission was very difficult.  Normally, the PI comes to the ward each morning and meets with the pediatrician and nurses since he has no real duties until the first patient arrives in the recovery room.  Many PI’s help with the pre-op exams.  The PI on this mission didn’t arrive until the first day of surgery as he had other commitments.  Even though there were some difficult patients on the ward and I called over to the recovery room to speak with him, he was always busy and offered vague advice through the nurse.  When patients had complicated or long recovery room courses, he sent no notes or messages about them, leaving us in the dark about what we should watch for.  His biggest transgression, however, was that he was very rude to Ella, the pediatric resident from Ghana who was working with us.  She’s an excellent physician and very knowledgeable about malaria and other local diseases.  After one of our program coordinators left to deal with the death of our surgeon, the other became very ill with severe dehydration.  Ella was with her in the recovery room helping to start her IV and calculate fluids when the PI came in, changed all her orders, questioned the IV placement and told her he didn’t like “trainees” in his recovery room.  So, that’s enough about him except to say that it took me awhile to convince Ella that remarks made by jerks carry no weight and are best ignored and forgotten.

Hans and I met in the parking lot as usual at 5:50 this morning, but Kathy, the pre-op nurse didn’t show up.  When I called her room at 6:00, she was still in bed having been up all night with diarrhea.  Being the compulsive team player that she is, she came over to the pre-op ward about an hour later and stayed the whole day.  Meanwhile, Madison, our remaining program coordinator became suddenly ill and quickly became so dehydrated that she was hallucinating. The Clinical Coordinator, Brynn was looking for her and found her in the OR storeroom, sitting on the floor and mumbling about a man and woman in the corner who were drowning and she couldn’t save them and she was really trying but she was so tired…  The content of the hallucination likely had something to do with the surgeon having been found in the pool the day before, but the fact that she was hallucinating was alarming.  They got her into the PACU, put in a couple of IV’s and started hydrating her.  She’s better today after a few liters of fluid, back in her hotel room on her IV.  It’s a bit chaotic here.

Yesterday, when there were still six patients on operating tables at 7:00 pm, the surgeons moved the 6 remaining cases to today and put them first for this morning.  It means a longer day again today, but I don’t think there are any short days in the Ghana plan.  Ella’s patient with ectodermal dysplasia is back on the schedule after her labs were normal, as is the baby who was cancelled when no one could start an IV. To be sure she would be well-hydrated today, Ella put in an IV last night and the baby received IV fluids overnight.  Today is “Sports Day,” and I wore my youth football shirt.  A boy, slightly older and not so bold as the Superman fan, had his mother ask for the football shirt.  Since I still had the scrub top and knew I wouldn’t be wearing the football shirt again, it was easy to say “Yes” and save her son the drama of approaching me himself.

Despite the large number of patients, today went smoothly.  There was a 52 year old man who had NOMA (a severe “flesh-eating” type of infection seen in tropical areas that moves rapidly and destroys tissue,) at the left corner of his mouth and left cheek several years ago.  He had his repair today with a fantastic result.  There was also a 56 year old woman with a wide cleft who had a beautiful result.  Because their tissues and muscles have been in an abnormal position for so long, it takes more pulling and rearranging to repair some of the adult’s cleft lips.  After surgery they have considerably more pain than the children, and when their blocks wear off, they are relying on acetaminophen and ibuprofen – the only post-op drugs used by Op Smile for safety reasons.  The post-op photos often show the pain and not the joy, but if you ask them, they are ecstatic to finally have normal faces. 

One of the Ghanaian volunteers explained to us that in Ghana, most people in the remote villages assume that clefts are either the result of witchcraft or due to a very bad deed the mother committed during the pregnancy.  Most of the babies are killed, often ritually by burning to destroy any remnants of the witch.  If they are not killed, they may go through rituals involving fire to drive out the witch, and several of the children had scars from these rituals.  This volunteer explained that the children we were seeing on the mission were incredibly unique as they were from these rural villages but their parents had gone against the village leaders and kept them.  This meant they were shunned and the child had to be kept indoors or covered up if they took him outside. The child, of course couldn’t go to school.  As in other countries, once the cleft is fixed, the curse is lifted and the child and mother are returned to full village life.  I can’t even imagine being an adult with a cleft, trying to make your way here.

Ella and I left around 8:00 and Hans took over the ward.  The last patient arrived around 9:30 and Hans was back to the hotel by 10:00.  He did fine and it was great to be able to have an early evening.  When I got to my room, I put water in the kettle and plugged in in for tea.  About a minute later, there was a loud bang and flame and smoke shot up through the water and out the top, breaking the lid.  I unplugged the famous kettle and went to bed.

Second Day of Surgery

The plan for Tuesday, the second day of surgery was to start right on time and do 39 cases.  Kathy, Hans and I and Sheríff, one of the nurse observers met in the hotel parking lot at 5:50 am to catch the bus to the hospital.  Kathy made a remark about seeing someone swimming in the pool as she walked up from her room – some fitness fanatic, I think she said.  As we were finishing up the pre-op checks on the patients in the third row, one of the mission coordinators arrived. She was obviously upset and gathered us in the medicine room to tell us that the surgeon from Egypt, had been found dead in the pool.  Team members eating breakfast on the deck saw someone motionless in the pool below and ran down to pull him out.   Two anesthesiologists, both on their first Op Smile mission, and a couple of surgeons tried to resuscitate him, but he never had a pulse.  Portable AED’s (to shock the heart if someone has a cardiac arrest,) are now almost universally present in public places in the US.  At our hotel here in Ghana, they had no AED or emergency equipment, nothing but chest compressions and rescue breathing to try to save their colleague. They felt so helpless.  The surgeon had been complaining of upper back pain while hiking yesterday and most people on the team feel he likely had a cardiovascular event as the cause of death.

Now there is a legal turmoil going on between Egypt, where he is from and Ghana.  There are strict rules to follow and questions to be answered when a foreigner dies in another country. These are in place to decrease the likelihood that Egypt, (or other countries,) will sue Ghana in the future for “bad acts” around his death.  One of our Project Coordinators has left for Accra to deal with officials from the two countries’ embassies, the police and officials to be sure that the required paperwork has been completed.  The family just wants his body home.  What a sad mess.  After a long discussion among themselves, the surgeons and anesthesiologists decided to go ahead with the day’s schedule feeling that the surgeon would not have wanted the patients to be sent home without surgery.  We ended up starting late again, and in the end, six patients were moved onto Wednesday’s schedule. There were about an equal number of babies with primary lip closures and older toddlers and children with palate repairs.  On the local table, the steady stream of adults with first time lip repairs or revisions of previous scars continued.  The only aggravation related to surgery was the cancellation of one of Ella’s long-time patients. This little girl has a mild form of ectodermal dysplasia. It causes dry, peeling, thickened skin that is tight around the joints.  Hair can be sparse and teeth and nails are also affected.  She’s six months old and was to have her cleft lip closed.  Ella has followed this child since her premature (27 weeks) birth and long NICU stay, and has remained friends with the mother.  The child is bright and has just a unilateral narrow cleft lip.  She fasted most of the day and then the Pediatric Intensivist (PI) convinced the surgeon that with her condition, she wouldn’t heal well.  Luckily, Ella was right there and fought for her patient.  They compromised on getting labs to show she absorbs her food and has no liver problems.  If the labs are normal, they will “consider her” for Wednesday.  More on the PI in my general comments below.

 Ella will stay late tonight and Hans will take tomorrow.  While he claims to feel comfortable, I’m a bit nervous because it’s his first mission.  He’s obviously medically qualified; his career was spent in Pediatric Oncology and Pediatric Intensive Care medicine.  He was and still is a wonderful teacher of the medical students and residents. Finally, he is a substitute teacher of Spanish and French at the high school in Stockholm. This is a new style of medicine for him, but he is experienced in the care of very sick patients.  He can call me back if he needs to, and there is also an on call list that has a surgeon, anesthesiologist or the PI on each night if there is a sudden medical emergency.   It’s very important to Hans to take his turn in this rotation, to pull his weight, and the night nurses on the team are comfortable having him there.

At 9:30, Hans and I left with the day nurses and other staff from the OR and other areas who were done for the day. Arriving back at the hotel by 9:30 was such a luxury.  I stopped at the restaurant on my way to my room to get some hot water to make noodles.  The restaurant manager said, “Sure, Ma’am, I can give you water, but why don’t you use your kettle?”  “What kettle,” I asked.  “The one in your room, of course, on the desk, by the wardrobe.  You can’t miss it.”  “All the rooms have kettles,” was his parting shot, called out to me over the heads of the non-Op Smile restaurant patrons as I slunk away to my room.  Indeed, my room HAD NO KETTLE, though in searching for it I found 4 huge dead cockroaches under the bed.  I went up to the reception desk and asked authoritatively for “my kettle.”  When this drew blank stares, I said that the “RESTAURANT CHIEF” told me every room had a kettle and that I should use mine to boil water.  I then put on my most serious face, stood up tall like my Mama taught me, put my hands on my hips and said, “MY room has no kettle.”  “Oh, said one of the men, you mean you’re supposed to have a kettle?  We’ll bring you one.”  Playing the role of demanding, wronged guest worked, and half an hour later, the kettle magically appeared.  Tea, coffee, soup and instant oatmeal will follow.  My future is blessed.

Here are some observations on Ghana:  The child-rearing style here is a mix of warm indulgence and what Ella refers to as “whacking.”  I’ve seen plenty of both this week.  The mothers carry the babies and kids up to about age 6 years on their backs, wrapping lengths of colorful cloth around them and under their fannies, tying and tucking the ends in front. Unlike in Guatemala where the women cross the cloth over the chest and shoulders, the Ghanaian women wrap it around their chests and low backs.  The result is that the baby rides much lower on the back, often bouncing along on substantial buttocks, and the heads loll back in a way that’s a bit alarming to a western pediatrician’s eye.  The legs are spread wide to accommodate the mother’s girth, and it makes me suspect there is a low incidence of dysplastic hips in Ghana – they ride in their own splints.

Some of the young patients, ages 3-5 years have been openly angry when they emerge from anesthesia.  I think most little kids this age would be angry in this situation.  Mom is supposed to be their protector, after all, and she allowed the big bad doctors to take the patient and return her with a painful mouth.  Several kids have spent 5-10 minutes yelling at, their mothers, hitting and trying to kick their mother once they are fully awake on the post-op ward.  The mothers seem to understand, and rather than stopping the child, punishing him or her or trying to cuddle or jolly the child out of it, they either sing softly or say soothing things or pick a small stuffed animal from our stash and put it on the floor by the raging child.  None of them interfered with the child, choosing instead to sit on their mattress and wait until the child was finished. Eventually, the child would wear out and come to the mother who would accept a hug and gently soothe the child.  They don’t seem to talk about the event and they don’t cuddle or kiss them excessively.  They seem to accept that the child needed to be heard, and then they move on.

The babies return from the PACU with elbow splints made of tongue depressors held together with tape.  We have cloth arm splints with tongue depressors in little slots inside and ribbon ties here on the ward. They’re put on babies who can’t keep their fingers or thumbs out of their mouths after lip or palate surgery.  Kids who were thumb or finger suckers before surgery must learn to do without so they don’t disrupt the lip or palate repair.   By the second day after surgery, most are ready to have the splints removed. When I approach with my bandage scissors, they are scared and often crying, but when they realize that I’m not hurting them and their first arm emerges, free of the splint, they look wonderfully amazed.  Most move their arm around, bending the elbow and smiling hugely.  A few immediately shove their thumb back into their mouths, but most don’t.

Toilet training begins at about 4 months with the mother taking the baby off her back, standing him on the ground and making a shhhing noise or saying deedeedeedee.  The latter is for poop which the babies do on the walkway, in the garden, beside the shrubbery.  Great praise follows successful outdoor toileting, but woe be to the baby who pees or poops while wrapped on the Mama’s back. The babies don’t wear diapers, and the mothers carry a cloth, reaching back to wipe any drips until the baby is old enough to start toilet training.  I saw a mother on one of the hospital walkways stop abruptly and unwrap a baby girl who looked to be about 4 months old.  She sat the bare bottom baby down none to gently in the middle of the walkway, and while people flowed around them, began to loudly berate the baby for going pee pee and deedee while in the wrap.  She stood over the baby, waving the colorful wrap, now wet and soiled, holding it close to the baby so she could see the evidence of her transgression.  The baby stared at her for the first 10 seconds of the rant, and then burst into tears.  The mother let her cry, continuing to show her the wrap and point to the ground as the proper place for “deedee.”  Eventually she wound down and wrapped the baby up on her back again.  I guess the technique works.  Tiny babies, not yet walking, are dry and perform their “dee dee” as needed when unwrapped and prompted.  Since the mothers carry the babies well into their toddler years, it makes sense that they would want them peeing and pooping in the grass as soon as possible, rather than on Mama’s clothes.  The contrast with western “toilet teaching” was startling.
Almost all the babies breast feed here and they seem to have a closer relationship to the mother’s breast than I’ve seen in the US.  While the mothers are sitting around on the ground or floor visiting, their babies are nursing, pausing periodically to admire, pat, knead and hug the breast before resuming their meal.  It gives the appearance that the breast belongs more to the baby, rather than just being a food source.  We went over to see the neonatal intensive care unit, and there was a breast- feeding group going on.  Babies who do not have respiratory issues are started at the breast at about four hours of age.  Otherwise, the mothers sit in the nursing group and express milk for their preemies to receive by tube.

Every morning, a large group of adults and kids down to about age 6 or 7 run by on the roadway in front of the hotel.  Some run backwards and some stop periodically to do pushups, pullups and a variation on jumping jacks.  The local volunteers explained that this is “Keep Fit,” a program that goes on all over Ghana.  Adults and youth form clubs and have training, competitions and tournaments to promote health and fitness.  Education is also strongly emphasized in Ghana, even in the rural areas. I don’t know the literacy statistics, but all our Ghanaian volunteers agreed that children everywhere in Ghana have access to good schools. The children and adults here have beautiful teeth.  I haven’t seen anyone eating candy or drinking soda, and the kids don’t like the dilute juice we routinely use for hydration. It’s too sweet.  They want water.  When we ask the mothers if anyone smokes around their baby, a routine question on the screening form, they seem universally appalled.  Who would do such a thing?  I haven’t seen even one person smoking since I’ve been here.  I thought I saw a young mother with a cigarette in her mouth yesterday, but it was a piece of wood used to eat with in place of utensils.

The hospital is strictly segregated by gender with men’s and women’s wards for each specialty.  Our patients caused a dilemma for the Matron in charge of our ward as the rule is that no adult men can spend the night on a ward where women are present, either as patients or attendants to patients. We, of course had both adult male and adult female patients and lots of mothers around.  If we were to insist on having our male post-op patients stay on the ward for the night following their surgery the night, routine protocol for all our patients, the rules would explode.  Despite our unique situation, the Matron remained immoveable on the idea of men sleeping on the ward. Luckily most of the adults had their surgery under local anesthesia, and therefore didn’t have to be observed while they woke up.  In the end, we sent them back to the shelter in the late afternoon, thus avoiding a mixed gender ward after nightfall.  We did have an occasional child who arrived with his or her father instead of mother.  In those cases, we just didn’t tell the Matron and fortune smiled upon us  ; she didn’t find out.

On this mission, someone decided that it would be fun to have “theme days.” Practically, this means the team members wear shirts or accessories related to the day’s theme, and Child Life gives the kids theme related toys.  Yesterday was Superhero day, followed by Disguise day, Tropical Day and finally, Sports day.  I went to Goodwill before the mission and bought a Superman T-shirt and a youth football shirt to wear on the appropriate days.  As I was walking from the post-op ward to the OR to get more oral rehydration packets yesterday, proudly displaying the Superman emblem on Superhero Day, a small boy, about seven years old, a sibling of one of our patients, stepped directly into my path and flashed me a huge smile.  “Madam, may I have your shirt?” says he.  “It’s the only shirt I have,” I answered, a bit taken aback.  His face immediately transformed from that of ‘the most wonderful smiling boy to whom you would, of course, LOVE to give the shirt off your back,’ into ‘the devastated, heart-broken boy who will surely die without your shirt.’ He put his hand over his heart, slumped his shoulders, let his knees sag and said, in a tiny voice, “But I love Superman.”  At first I repeated that it was the only shirt I had and said something about wouldn’t it be silly if I gave him my shirt and had to run around in just my underwear shirt all day.  When he just looked sadder – a career on the stage is surely in his future – I detoured to the OR locker room and got a scrub top to wear and handed over Superman.  Though the shirt was way too big and very sweaty, the boy was ecstatic.   I’m not sure he’ll ever take it off.

The First Day of Surgery-Ghana

I’ve just completed day one of surgery on this mission.  We are scheduled to have four full days of surgery and then a half day on Saturday.  There are seven tables, two are for teaching and therefore will go a bit more slowly, and the last table is for cases that can be done under local anesthetic.  All the surgeons rotate doing the “local” table; some love it and others would much rather have the patient asleep.  The “half day” on Friday may be more like a 2/3 day as there are lots of patients, many of whom have traveled great distances to get here.  We’ve seen quite a few patients from Togo, the small African country, not the island.  Its border is only about 8 hours from Ho, and there are no cleft surgeons in Togo.

On Monday, Kathy, a pre-op nurse and I went to the hospital at 5:50 am -  about 45 minutes ahead of the rest of the team - so that we could get the first two rows of patients ready for the surgeons.  The night nurses had done a great job with hydration, waking the patients every two hours to give them dilute juice.  Many parents don’t want to wake their babies for fluids and then deal with getting them back to sleep, (never wake a sleeping baby.) It takes a skilled, determined nurse to get 37 babies, toddlers, kids and adults awake enough to drink dilute juice three times between midnight and 6:00 am and remain cheerful about it.  If you don’t maintain hydration in this heat, especially in the babies, the anesthesiologist may not be able to start an IV and the surgery will be cancelled.  That was exactly what happened today to a one year old who is here to have her palate closed.  Ella, the local pediatrician who is a second-year pediatrics resident in her real life -  and I were called to the OR with the message that they “needed help.”  We ran over, fearing the worst.  A call to come to the OR usually means some catastrophe – cardiac arrest, massive hemorrhage or allergic reaction – where additional experienced hands are needed.  When we arrived, we found six people surrounding a baby who was asleep on the OR table.  The anesthesiologist was keeping her just under with inhaled anesthetic while two surgeons, two other anesthesiologists and the pediatric intensivist tried to get an IV going.  Ella and I joined in, each grabbing a limb while one of the surgeons started swabbing the groin and eight of us searched for veins, poked in IV catheters and tried to advance them, for another 40 minutes.  Someone shaved a patch of hair looking for a scalp vein and the surgeon tried to get into the femoral vein, a big vein in the groin.  We looked at her external jugular veins, but even they were not obvious enough to stab her there.  In the end, her surgery was cancelled.  If possible, we’ll try to get her on the Wednesday or Thursday schedule.  There were 39 patients on the schedule for Monday, including those on the “local” table.  Having this extra table where older kids and adults with lip clefts can have surgery with just local anesthetic, without added sedation, means that about 35-40 more patients will have surgery this week.  If we had to tie up an anesthesiologist and allow for time for the patients to be “put to sleep, awakened and “recovered” in the recovery room, the number would be cut in half.  The fact that these patients are willing to undergo this surgery with just shots of lidocaine into their faces shows how desperate they are.

The first day is always long because both the OR and the ward staff run a “mock code” so everyone knows what to do if a child had a serious event – respiratory or cardiac arrest, severe bleeding, serious allergic reaction.  It’s my job to do this for the ward, and it includes going over the “crash box” that has all the emergency drugs, making sure they’re all there, and reviewing the roles of the team members.  In an emergency, the child is moved to the “crash bed” by the nurses station where oxygen, the crash box, defibrillator and all other necessary items for disaster are kept.  A child can also go to this bed just for close observation for breathing difficulty or more than mild bleeding after surgery. Because of these “last details for the first day of surgery,” the surgeries on the first patients usually don’t begin until around 9:00, an hour and a half later than on subsequent days.  This, of course means the day will end later.  The last patient arrived on the ward at 10:30 tonight and we were back at the hotel at 11:30. Hans and Ella and I decided to divide up the late nights – an amazing luxury that I’ve never before experienced. I took the first night, Ella will stay on Tuesday and Hans on Wednesday. On Thursday, I’ll stay again.

One of the early kids to come to post-op this morning was an 18 month old palate patient. His oxygen level was slightly low at 85%. As soon as his mother put him down on the bed, his oxygen dropped to 70%, he woke up and began thrashing about, kicking and screaming.  In one of those unfortunate coincidences, his Mom was not calm and helpful in a crisis but instead became an adult version of her child.  He, of course, followed her lead and was soon hysterical with an oxygen level of 60%.  We took him to our crash bed and opened the crash box and tried to get oxygen on him.  It was like trying to put a mask on an octopus.  He kept grabbing for his mother who would snatch him off the bed, wrap him in her arms and loudly plead with him not to die. Soon a crowd of parents and kids gathered around the bed calling out advice, encouragement and exhortations against death.  With the boy’s oxygen at 58%, I asked one of our burly male nurses to snatch him back from his mother and we ran him to the OR, handing him off to the intensivist to deal with.  A little sedation and lots of oxygen got him to 85%, and six hours later, he was back on the ward, breathing comfortably, but still only at 85%.  His O2 saturation dropped to 70% if we put him on his left side, though he had no change in respiratory rate or work. A chest X-ray showed a marked difference in the circulation of the two lungs with decreased blood flow to the left lung, an abnormality of right cardiac border, (you can tell I’m not a cardiologist,) and increased vasculature in the upper lobe, I think.  I don’t know what he has, but he needs an echocardiogram.  That makes nine patients I’ve seen in four days with major congenital heart disease.  The good news is that there are two excellent pediatric cardiologists in Ghana and we can refer the kids to them.  The bad news is that the echo machine at this hospital is broken and won’t be working while we are here.  Although the radiologists don’t usually read the films in Ghana, we asked for readings on these eight incredibly abnormal X-rays, hoping to get some clues. Alas, I fear the lack of reading practice has taken its toll.  All the readings were the same: “enlarged heart, needs echocardiogram.”  The one we put on a diuretic for congestive heart failure had an addendum: “congestive heart failure.”
 Working with two other pediatricians makes a huge difference.  This mission is very big and complex, which makes for lots of time-consuming extra work.  In addition to managing the surgical patients, every day there are children and adults who need to be seen for illness. Most are parents or siblings of the patients, and they are staying at the shelter, a motel-like residence where they are housed for the duration of the mission.  As one might expect, gastrointestinal illness has broken out, and in this heat, dehydration occurs rapidly, especially in malnourished babies.  We have rehydration packets and water to give them, but have run out and had to re-order three times now.  I’ve also seen seven patients with malaria and have started to be able to recognize the symptoms.  Ella, the pediatric resident, knows it well. She does a rapid screen and then gives the patient the medication from our stash.  The people here treat it like a bad cold and usually have had it in the past.

Hans, the pediatrician from Sweden is on his first mission.  He is one of those very kind, thoughtful, “old school” doctors that everyone would like to have for their own.  He’s had a bit of an adjustment to make to the shortcuts required by the pace on the mission.  For instance, when a child comes back to the ward from the OR, unless the child is unstable, the pediatrician takes the chart and writes orders for ibuprofen and acetaminophen before doing an exam. This is done so the nurse can go get the medication and give it right away.  All patients get an acetaminophen suppository in the OR at the start of surgery, and local anesthetic nerve blocks toward the end of surgery. However, as those are wearing off, the pain will kick in.  I’ve found, and have been taught by other Op Smile pediatricians, that a dose of ibuprofen on admission to the ward goes a long way toward providing pain coverage.  Hans, as a careful, thoughtful physician, would normally review the chart and examine the child and then determine what medications are needed. Prescribing formulaically goes against his medical principles.  Another time saving device I use is that once I’ve admitted a post-op patient, I partially fill out the discharge papers, leaving the discharge exam and signature line blank. I fill in pain medication doses, time and place for the follow-up appointment, and I check off the pre-printed boxes for lip or palate care and diet instructions.  When the surgeon discharges the patient, I fill in the exam and sign the page. This saves time when all 39 kids are discharged at the same time the pediatrician is trying to finish up the pre-op exams and round on the post-op patients with the surgeons.  The patients need to leave so we can ready the ward for the patients who will be arriving from the OR.  Hans is now following this protocol, but in the beginning, it felt very foreign to him to write anything on the discharge summary until the surgeon had officially discharged the child.  He looked at me after I explained the “partial fill-in,” and said, “but it says, “discharge” on the form right here!”  To his credit, he has quickly become comfortable with the shortcuts, realizing that they don’t involve falsifying records or recording exam results 24 hours before the exam. I clearly remember my own discomfort the first few missions.  I had to find a balance and a way to provide excellent pediatric care in a much more efficient and time-constrained manner than I was used to.

The actual surgeries went well today but finished very late. The next to the last patient had his palate repaired and had been on the ward only half an hour when he started bleeding heavily.  For minor bleeding, the nurses or pediatrician can put pressure on the palate with gauze or have the child rinse with ice water.  We occasionally put various clot enhancing substances on the bleeding spot as well.  This child, however, was beyond all that. We called the surgeon down and after clearing out a bunch of clots, he soaked a piece of gauze in lidocaine with epinephrine (constricts the blood vessels,) and held it against the palate for 15 minutes.  The child started out protesting but finally fell asleep with the surgeon’s finger in this mouth.  The surgeon seemed surprised that the bleeding stopped as he was thinking he would be taking the child back to the OR.

A final anecdote before bed.  As I was walking down the outside corridor this morning on my way to the storeroom, I passed by a group of kids, age about 8-10 who were siblings of our patients.  They were playing dodge ball with two 8” diameter beach balls brought by the Child Life specialist.  As the days's discharged patients filed by, the boys stopped their game, the 10 year old  tucking one of the balls under his arm to give high fives to the departing kids. One of the departing mothers who had a baby on her back, grabbed the ball out of the boy’s hands and said to him, “I need this ball more than you do,” and walked off to the bus with it.  I was appalled but not actually surprised.  The people here have so little that putting kids first doesn’t always happen.  That’s it for today. Tomorrow we’ll come early again and Hans will join us.

Announcement Day

Before I get into a description of this long, long and unique day, I want to let you all know that I have finally solved my WIFI problems. The computer was hooked up with the hotel's WIFI and therefore my mobile WIFI wouldn't connect. I took everything to the hospital today, and in a free minute (HA!) I connected the WIFI and it went through. When I opened things up back here at the hotel, the connection had stuck and I was able to delete the hotel WIFI. So, barring further tech events, I should be able to blog and put up photos.

So, a few words about the photos: I have posted a new batch but without labels as I'm trying to catch up. If you click the link I sent you, you come to the page on OneDrive. Just wait and the album will come up. If you click on photos or something else, you may just get one photo, not the whole album.
There are photos there from the hotel in Accra. I had a huge suite. There was a big festival for the first lady of Ghana who was there all day doing various programs on empowerment of girls. There are a couple of photos of drummers and dancers - fast moving and blurry.  There's a photo of a wayside "women's toilet" on the drive to Ho. Most of decided we could wait.  I saw a baby with very low oxygen and there's a picture of his fingers showing clubbing, a sign of chronic pulmonary disease.  The pre and post op wards are shown with mattresses on the floor and a stack of extra mattresses by the wall. At least the babies won't be falling out of bed.  Most of the food in the restaurant is very western - spaghetti, pizza, rice, french fries.  However, one night there was a dish made of cassava and fine cornmeal made into a kind of paste and served with a really hot pepper sauce. There's a photo of patient washcloths hanging out to dry and one of "the walk of death." This is a pathway on the edge of the lawn where we screened patients and had the announcement day today.  It has small rocks and a border of big rocks that get kicked in among the small ones.  It's almost impossible to walk down the whole path without tripping, hence the team's name for it. Finally, there are some photos of Ghanaian women and their babies and a mother daughter pair, each with a baby on her back.

So, announcement day here is orchestrated to make the disappointment of not being chosen for surgery a little easier to take. Each of these patients meets with the surgeon who explains why they won't have surgery and answers all questions.  If they want to meet with the pediatrician, they do that as well. Then the coordinators meet with them and arrange their next mission visit.  it took until 3:30 in the afternoon to get through them all, and then we had to see all the ones who are having surgery, get their special wristbands on and admit the ones who will have surgery tomorrow. In addition, I'm still the team doctor and several team members needed minor but time-consuming attention.  There were also seven sick kids who needed prescriptions written, labs ordered, etc.  The other pediatricians had been sent back to the hotel by one of the (misinformed) coordinators who thought we were done, so it became a very long day.  The last sick child was very sick and ended up having to be admitted to the hospital. We arrived back at the hotel at 7:45 and had our pre-surgical meeting at 8:00. Tomorrow morning the team will leave the hotel at 6:30 but one of the nurses and I will leave at 5:50 so we can get the first two rows of kids ready for the six tables.  There are 167 kids and adults scheduled for the week - ambitious.
.

Second and Final day of screening

Second and Final day of Screening-April 22, 2017

This was a generally frustrating and difficult day, starting with the lack of WIFI at the hotel and continuing with some sad medical diagnoses. The IT nightmare is complicated because the personal WIFI unit I rented for this mission isn't functioning.  I’m not able to email support at the company as I don’t have email.  The hotel internet is “present but not functional.” It has attached to my laptop’s WIFI but is not providing service for either the laptop or the phone.  Because it’s there, I can’t use the personal hotspot on my phone.  I wouldn’t want to use it long, but I was hoping to turn it on long enough to send my long-suffering husband an email letting him know I hadn’t fallen off a cliff.  In the end, I used a team member’s phone to send my message, and soon one of the IT guys from the team is coming over to take a look at my computer and phone and the WIFI thing.  It’s amazing how disconnected I feel being so far away from home and unable to talk with anyone in my family or to check the news.  If this were a planned wilderness camping trip sans electronics, it might have been very relaxing.  As it is, I’m stressed !!

The medical part of the day started with me in my continuing role as Team Doctor.  Thank goodness the Ped Intensivist, to whom this job belongs, is arriving tonight.  Yesterday, a nurse came to see me with fever, chills, headache and abdominal pain. Her rapid Malaria screening test (yes, there is one,) was positive and she is now on treatment and starting to improve.  Today the man who does medical records, the one who chose not to take malaria pills on the Ghana mission, (Ghana, practically the center of malaria’s universe,) came down with the same symptoms and, indeed, the same positive test. Two for Two.  Back in my pediatrician role, I saw a two year old boy with diarrhea for 2 ½  weeks.  After much prying, I learned that he had been treated for malaria three weeks ago and that the drugs that treat malaria often cause vomiting, diarrhea and cramps for weeks.  I also handed out Maalox and Pepcid from the kit to a nurse with heartburn, and Tylenol for headaches, likely brought on by mild dehydration.  It’s a challenge to drink enough water to keep up with the heat.
I guess I’ve been trying to avoid writing about today’s patients, but I can’t babble on forever. Yesterday I wrote a bit in the blog about the three babies with heart murmurs.  Only one was hypoxic (low oxygen,) but all three had significantly enlarged hearts on X-ray.  They’ll have their Echocardiograms on Monday.  Today I rechecked the baby whom I started on a diuretic for his  early  heart failure.  He’s much improved with a normal size liver and slower breathing.  However, I saw three more babies today with serious heart defects. None of the mothers had been told there was any problem other than a cleft lip. One baby is four months old and is still at birth weight.  His mother says she nurses him and then gives formula and he’s a great eater.  However, his oxygen is very low, and I think he just can’t keep up with his caloric needs.  He also appears to have glaucoma.  The second baby was 18 months old and has a normal twin sister who was on Mom’s back.  The boy had a cleft lip and palate, and his mother was very excited about finally having him look “more normal when I take them out together.”  He was so blue!  He had a very quiet murmur but a huge heart on his X-ray.  His oxygen saturation was only 60% (normal 95-100.)  He had the most impressive clubbing, an abnormal swelling of the bases of the fingernails, that I have ever seen.  Finally, I saw a 2 ½ month old baby with multiple problems.  I think the baby has Trisomy 13, a syndrome in which about 70 % of the babies live less than a year. This baby had very low oxygen, a long loud murmur, extra fingers, dislocated hips and bilateral microphthalmia, very small poorly formed eyes.  Although his mother had brought all his records with her, including his cardiac Echo, his X-rays and specialist reports, she had no idea about the results of his tests.  She was tearful and said that each doctor would see one part of her son and say there was nothing to do. The eye doctor, Mom said, told her, “Your son is blind so good-bye.” Her question to me was, “If my son can’ t see well, why isn’t the doctor helping him?” Since there were two other pediatricians there for screening, I spent the next hour with her, trying to explain his medical problems and to answer her questions.  Although she left with a much clearer idea of her son’s situation, and seemed grateful, we were both profoundly sad.  Her final comment was that she had hoped that he would be able to walk.  Even in the face of this devastating condition, parents have such strong hopes for their children.  Each of these parents, the four yesterday and three today, came here hoping for a new face for their child.  Instead they have learned that their child has a much bigger problem, hidden though it is.  We won’t know until the ECHO’s are what the magnitude of the problems are, and whether they can be fixed, but I expect, given where we are that prospects will be limited.
So briefly, we screened 280 children and adults and tomorrow the team will announce who is on the schedule and will meet with those who are not to set up next steps and next missions. It’s bound to be difficult.  I don’t think I’m in on that part of it, so I’ll likely be helping to set up the wards. We don’t have an official team day this mission, but there’s a “Make your own Batik” session tomorrow that I’ll likely skip.

First Day of Screening

First Day of Screening, April 21, 2017

Today was the first of our two screening days.  There are about 300 patients in the shelter from as far away as 12 hours by bus.  A woman named Sabrina and her husband were on a motorcycle trip around Ghana a couple of years ago and came across an Op Smile mission.  They asked if they could help, and ended up playing with patients, unloading cargo and visiting with parents while their kids were in surgery. They were so taken with the whole event that they decided to stay in Ghana and join the Op Smile Ghana organization.  Their main job is to scour the countryside on their Harleys, searching out infants, children and adults with clefts and telling them about Op Smile.  They then arrange busses at pick-up points the day before screening to bring the patients to the shelter.  As you might expect with someone doing that work, they are both incredibly exuberant, energetic people.

The screening was conducted at the hospital where the surgeries will take place next week.  As usual, pediatrics and anesthesia joined together to screen patients. Usually a pediatrician and an anesthesiologist see each child, but since there are three pediatricians, Hans, a first time volunteer from Sweden, Ella, a second year pediatrics resident from Ghana, and me. (the pediatric intensivist won’t be here until Monday,) and nine anesthesiologists, the six “extra” anesthesiologists paired up and saw older kids and adults.  Any patient five and under was seen by the pediatricians.  Hans watched me do one patient and was then off on his own with an anesthesiologist, though because we are all together in one room, we often ask each other to have a look at a child we are screening.  This made it easy for Hans to be independent but also have backup if he needed it.  Ella is extremely experienced and a great pediatrician. She has to finish her residency before she can be credentialed, but I’ll sign her Op Smile credentials at the end of the week.

There were two kids with acute malaria at screening today, and both the parents and Ella were very calm about it.  One mother had had malaria herself about a month ago, and both expected that the high fever and achiness their children were complaining of would turn out to be malaria.  Ella arranged the prescriptions and off they went. The Pedi Intensivist acts as the doctor for any team member who is taken ill on the mission.  Since he isn’t here yet, I get to play Team doctor until he arrives. One of the nurses came to me saying, “I think I have malaria again.”  We did her rapid test right in the screening room, and it was positive.  Ella arranged her meds as well.  I ruled out scabies and chicken pox in a couple of patients and handed out bacitracin for some superficial skin infections.  I’ll be glad when the real team doctor arrives.

Today was fascinating, (medically,) due to the “extra-cleft” diagnoses.  Within the first hour of screening, I saw three babies with cyanotic heart disease.  One was a four month old with an oxygen saturation in the low 80’s, a loud long murmur and a weight just 500 grams above his birth weight.  His liver was big and his breathing fast.  His chest X-ray was rotated (not straight on,) so it was hard to say much about it except that his heart is huge and globular.  After discussion with Ella and the pediatric anesthesiologist, I started him on a little diuretic to see if he can eat more easily.  Two other babies had big murmurs but oxygen saturations in the low 90’s and normal livers.  They also had big hearts, one with a wide mediastinum and the other not.  They’ll have Echocardiograms on Monday and then we’ll try to get them appointments with one of the two pediatric cardiologists in the country for next week.😝😝  I also examined a baby with microcephally and spasticity in addition to her cleft lip.  Her disabilities may well be due to the ZIKA virus. Finally, I saw a nine-month old who weighed 4 kg at birth and now weighs 4.9 kg.  He’s grown pretty well in height, but is very scrawny.  I watched him nurse and he did fine.  It took a bit of careful, gentle questioning through an interpreter, but I found that Mom is only offering the breast three times a day.  As I was finishing my exam of the baby, I went over to discuss this baby with one of the surgeons whom I knew from previous missions.  He's not only great technically, but I knew he was always careful to consider each child's circumstances fully.  I found him in the midst of an argument with the rest of the group who wanted to postpone this baby’s surgery to give him time to gain weight.  He felt strongly that they should put the baby on the schedule now because he thought the infrequent feeding was due to the mother's embarrassment by the baby’s appearance.  He argued that fixing the baby’s lip make him more acceptable and the mother will be open to feeding more.  More importantly, he’s afraid that if we don’t fix the lip, the child will continue to waste away.

Tomorrow we screen the second 150 and on Saturday night, make up the surgery schedule.  Sunday is devoted to telling the parents whose children were not chosen, explaining why and setting up their appointments for the next mission.  Some are straight forward – too young or poorly nourished, the babies with the heart defects that need attention and kids who are acutely ill.  Some, however will miss the cut by chance as there are more qualified patients than there are spots on the schedule.  Just like in Madagascar, here in Ghana there is a huge backlog of untreated patients.  These training missions are designed to address that problem but will take some time.