Friday, March 11, 2016

Jose Daniel: Critical Illness on a Mountainside in Rural Guatemala

When you spend 4 years doing a pediatric residency, you finish your training pretty comfortable with recognizing a sick child.  I think that is probably one of the greatest gift of those 4 years.  Then if you chose to go on and do outpatient primary care pediatrics like I did after training, the first few years you have to learn how to field all of the questions of mostly well children's parents on your own, having had little training in those types of questions. Our training does not prepare us well for intricate questions about potty training, teething, sibling rivalry, sleep issues or other more mundane topics that fill our outpatient office time.  We learn along the way, but we never forget that one patient in training with meningitis, or heart failure, acute leukemia, or life-threatening asthma.  Thankfully even as you fill your knowledge well with all of the outpatient "well child" issues, the critically ill knowledge stays with you, though you do not use it on a daily basis any more.

On Tuesday in clinic on a rural mountainside in Guatemala I was presented with a critically ill 40-day-old infant.  His name was Jose Daniel.  He was the fifth child of the family and was only supposed to come to clinic for a weight check.  But our phenomenal triage nurse, Stephanie, welcomed him to clinic, learned he was premature by 6 weeks and thought maybe he should see the pediatrician while he was there instead of just being weighed and sent home.  As I got his history from his mom I had yet to lay eyes on him.  They bundle their babies here in layer after layer of clothes and perajes (wraps).  What I learned is that he was delivered early because mom had pre-eclampsia.  He was 34 weeks gestational age but did fine in the nursery and was sent home at 3 days of age, having no recognizable problems in the hospital.  He had been seen twice since birth - once at an outside clinic and once by a medical team the week before us in our same clinic.  He was not growing well so in addition to breastfeeding he had been started on some supplemental formula.  He indeed was not growing well as we plotted him out on his growth curve.  I asked mom if he nursed with similar vigor as her other 4 and she said yes - often little 34 week premies have trouble feeding.  So it seemed he was eagerly feeding, but not gaining weight.  He had normal stool patterns and did not spit up, so it seemed he was not loosing calories through stool or vomiting.

So, the next step was to examine the patient.  Mom unwrapped him from his many blankets and I saw his face for the first time.  As you can see in the photo he has some facial characteristics that are worrisome for Trisomy 21 (Down's Syndrome).  He has almond shaped eyes, a small midface and a protruding tongue.  When I put Jose Daniel on the exam table and unwrapped him I knew immediately we were in trouble.  As you can see in the photo and watch in the video Jose Daniel was not breathing well.  He was using every ounce of his energy to keep breathing.  Those little muscles between his ribs and under his ribcage were pulling with all their might to keep moving.  He was clearly in distress.

I asked mom how long he had been breathing like this and she said, "His whole life."  Then I listened to him.  He had clear lungs but had a heart murmur.  I quickly finished the rest of his exam - which was notable for low tone, and no simian creases on his hands (can be common in Trisomy 21).  Then I asked one of the students to get nurse Stephanie in with the pulse oximeter.  As I suspected he had low oxygen saturations at 78% (should be above 90).  Trying to remain as calm as possible we started mobilizing to get him to the hospital.  We briefly told mom her child was ill and needed to go to the hospital now and we were going to take him.  Nurse Stephanie is fluent in Spanish and was incredibly helpful in communicating the urgency gently with his mother.  The mom asked if we could stop at her house in town on the way to the hospital to get some medical records she had on him from his other clinic visit.  I told her that was fine, as I thought it may help solve some of the mysteries of what was wrong with him for the hospital staff.  I decided it would be best if nurse Stephanie went with him in transportation as she is fluent in Spanish and I trust her with my own life!  I figured with mom's history of him having breathed this way his whole life he was compensating well enough that he was not going to crash in the hour it would take to get her to their home and them all to the hospital.  I stayed in clinic to continue seeing all of the other patients who were already backing up in triage.  In the mean time our team of Xavier students all stepped up to the plate to run that triage room like a boss!

You never really know how an emergency room in a foreign country is going to react to a patient sent in from a "foreign" doctor.  Thankfully the emergency room nurse respected Stephanie's statement that she had an ill infant, unwrapped the baby and immediately kicked into gear, getting oxygen on him and a chest xray ordered.  On the film his lungs had bilateral infiltrates (pneumonia, or fluid from heart failure), and an enlarged heart.  She also heard the murmur and little Jose Daniel was admitted for stabilization and the plan was put in place for him to get transferred to Guatemala City for an echocardiogram.

At this time we still don't know all of the answers.  I suspect he may have Trisomy 21 and heart failure from congenital heart disease, which is very common with Trisomy 21.  But he could also have normal chromosomes and just pneumonia or weak lungs from his prematurity.  Either way, he was very ill, we were able to recognize it and get him to a facility that can do the diagnostic work up he needs.  So it all worked - even from a mountainside in rural Guatemala.

Every year I have come on this trip I have mostly seen well children - there has been a child mildly ill with pneumonia, Luisa and her cerebral palsy, the 2-month-old baby 2 years ago we took to the hospital with a fever, but those kids overall did fine and probably would have done fine even if we weren't here.  I don't think Jose Daniel would have done fine if we weren't here.  I think our team was here at the right moment for Jose Daniel.  Since then we have talked about him as a group and individually many times.  Not only did the students learn a whole lot of medicine from him, but he also deepened our relationships with one another.
"Adversity has the effect of eliciting talents, which in prosperous circumstances would have lain dormant."  - Horace
I have so much gratitude from that encounter with Jose Daniel.  I am grateful for my training, and my ability to recognize a critical patient and remain calm enough to make a plan to help that patient, grateful Stephanie Ibemere was there along with Rabbi Abie to transport him, grateful the students got to see all of that, and grateful this beautiful little baby is getting the help he needs.  Gracias a Dios!

Lauri Pramuk, MD

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