There were three special pediatric cases in a three-week period at St. Gabriel’s Hospital this year.
Sam was a young adolescent, living in an orphanage. He was brought to the hospital with complaints of weakness in his left arm and leg – sudden onset. He also had a headache with nausea/vomiting. The medical director referred him to me. My evaluation revealed bilateral upper extremity tremors, difficulty with vision as well as the chief complaints. He was referred for a CT brain scan which showed a right thalamic astrocytoma. Sam passed away four days later.
Thomas was a toddler, brought to the hospital by his mother with complaints of weakness in the right arm and leg. Again, the medical director referred him to me. A previous admission reported weakness of the left leg. His developmental history was normal – previously running around the village playing with his friends. My evaluation confirmed the right sided weakness and neglect with difficulty sitting or standing alone. I recommended a CT brain scan, but the mother felt she needed to talk her husband and the village elders before having the test done. So, she went home. Alex, the home based palliative care coordinator, I and the students visited them a few days later to follow up (a two-hour trip one way on some rugged roads!). The nurse met with the father and the elders while we spent time with the mother, grandmother and child. The family agreed to have the CT scan done (and not to take the child to the traditional healer). Arrangements were made for the test, but the phone contact we were given to communicate with the family didn’t connect. So, Alex and I went back to the village to confirm the test plans in person. When we arrived, we learned that the little boy has passed away the afternoon before. Although the diagnosis was not confirmed, the suspicion was that he might have also had a brain tumor.
The next day, the medical director referred another boy, Harry – a second grader – with complaints of left side weakness, head tilt, and eye squint. The problems were noticed two months ago. My evaluation also revealed significant ataxia. The family agreed to the recommended CT scan which showed a pontine glioma (suspected to be diffuse). The boy, his older brother, Alex and I traveled to Blantyre (five hours away) to consult with the only neurologist in Malawi. He reviewed the CT scan and confirmed the diagnosis. The treatment options were not optimal for a cure, so a palliative approach was recommended. The family was given resources for palliative care and returned to their village with the child.
When I asked the neurosurgeon about these three cases….why three cases in three weeks? He said this clustering has been reported in the literature. However, it has been thought that it is not actually an increase in the incidence, but rather an increase in the recognition of clinical presentation of brain tumors. So, children have brain tumors (the tree falls), but if the child is not brought to the hospital and the clinicians at the hospital don’t confirm the diagnosis, , the condition is not recognized (the tree falling doesn’t make a sound).
I will be working with the medical director at St. Gabriel’s to establish the best protocol possible, given the limited resources, for early identification of children with suspected brain tumors. We are working on a clear clinical pathway for early referral for CT scan and neurosurgery consultation.
I’m saddened by the conditions that take life from these young children. Some of the conditions would not be cured in the US, either. However, the children and their families in Malawi have a right to know and understand the diagnosis – even if the treatment is not available or not feasible. I will advocate for each of them and hope for new advances in treatment options for these conditions.
January 16, 2017
It was a wonderful week with the 2017 Physio2 class! This class was particularly engaging, eager to discuss and not hesitant to challenge information with good questions. They are an honest group – and gave me very helpful feedback on my instruction.
They have not yet been in the clinic, and are just starting learn some basic examination and evaluation skills. And, although some have not had much exposure to what physical therapy is, they are all ready to learn. I’m excited for them to have their first patient encounters. As much as I try to bring case examples and real life applications into the classroom – there is little substitute for what you learn from direct patient care.
Martha, Maggie, Mphatso, Vitumbiku, Vanesa, Ruth, Herniomo, Gomezgani, Abel, Symon, Julius, Daniel, Ebbie, Chidikani, Simon, Omex, Wyson, Tendai, Ephraim, Wezi, Maureen and Reuben…I wish you all the best. Remember that your ability to understand the whole patient will make you an expert therapist who can develop interventions that will lead to recovery.
Thank you for the time we had together. Remember that people will be watching you to learn about physio – so your best, be a leader and change people’s lives.
January 16, 2017
For the past few years, I’ve been reading books here in Malawi that were suggested by my family.
This year I read some great books – thank you for your suggestions!
No Man is an Island by Thomas Merton was my choice after listening to a podcast by Krista Tippett. “[man] cannot find himself in himself alone, but… he must find himself in and through others…We are all members of another.” The author is a Catholic writer, mystic and Trappist monk of the Abbey of Gethsemani.
Ashley’s War by Gayle Tzemach Lemmon was my book club’s choice. What an amazing story of women who were a part of Special Operations Teams in Afghanistan and helped the soldiers communicate with the mothers and children. The storytelling in the book made me feel I was there alongside these on their extremely difficult missions.
The New Jim Crow: Mass Incarceration in the Age of Colorblindness by Michelle Alexander was my younger son’s choice. An eye opener – this book left me with a lot of emotions…disbelief, anger, shame and resolve. “We have not ended racial caste in America; we have merely redesigned it…this book argues that mass incarceration is, metaphorically, the New Jim Crow …the system of mass incarceration is based on the prison label, not prison time.” Curious?…a must read.
The Accidental Universe by Alan Lightman was my older son’s choice. The weaving of the spiritual and physical universe in his discussion is masterful…”Science can never prove or disprove the existence of God, because God, as understood by most religions, is not subject to rational analysis. I am equally impatient with people who make statements about the physical universe that violate physical evidence and the known laws of nature…we all depend on the consistent operation of the laws of nature in the physical universe day after day.” His descriptions of the symmetrical universe (the symmetries in nature such as in a snowflake), the Higgs particles, the Big Bang, how we are like Flatlanders, the gargantuan universe, and our disembodied life (technology) made me feel small. The morning after I completed this book, I was on a run on a small footpath near the hospital, and stopped to think about our universe and possible alternate universes. John McQuiston III in Always We Begin Again captured my thoughts well: “When we consider the vast reaches of the cosmos, the incomprehensible forces at work in each moment, the numberless stories of each life, the millions of forgotten ancestors who preceded us, the untold acts of kindness which occur each day, We humble ourselves. We keep silence.”
Wired for Joy by Laurel Mellin was suggested a long time ago by my mother. I’ve enjoyed reading it here in Malawi where they are many things that bring me joy. It also helped me to better understand, possibly, the joyful nature of the Malawian people. They are wired that way.
An Irreverent Curiosity by David Farley – so far, a very entertaining read about a relic in a small ancient village in Italy. I can’t put it down!
January 16, 2017
There are so many people that bless my time in Malawi. To mention a few:
Rosemerrie – my excellent and patient Chichewa instructor
Richard – a reliable and kind driver who brings me to Blantyre each year
Rose, Dorothy and all at the Zambezi house – with a warm welcome for me each year
Dr. Mbeya and the medical staff at St. Gabriel’s – a collaborative team, working hard to provide care in difficult circumstances
Dr. Kamalo – one of two neurosurgeons in Malawi who does surgeries daily for children with hydrocephalus, trauma and brain tumors, joyfully and humbly serving
James/Grace/Tandala/Sangwani/Alice – graduated physical therapist students in Malawi who are now teaching and/or providing clinical instruction to upcoming students
Alex Ngalande – a tireless warrior for palliative care, and a leader for the community health workers
Miriam – a visitor with whom my path has crossed for about 10 years, it is a pleasure
Enock and Amy – working hard for the physiotherapy program
John – who cooks, and found a way with little electricity to make Alycia’s birthday cake
Shida – a friend and gracious presence at St. Gabriel’s
Cathy – who solves all my internet and phone issues – while holding her daughter
John and family – who welcomed me for an afternoon meal and visit
Emily – who is doing amazing things in with Partners in Health in Neno
Ndathokoza…I’m grateful for you all.
January 16, 2017
It’s a never-ending adventure when you head to the village – and a challenge at times to think out of the box about ways to help patients and their families. The village is a place that may seem lacking in physical resources – but it’s full of curious children, welcoming families and appreciative patients. Often I’m asked to see a patient’s neighbor…a person who also has a physical disability and has yet to ever have physical therapy. Once the community sees what it’s all about – they understand that others could also benefit.
There were six patients that I regularly visited in the adjacent village – just a short walk from the hospital…an elderly woman with a stroke, a retired school teacher with a stroke, a retired school administrator with diabetes and a stroke, a businessman and farmer recovering from a back injury and two young children with cerebral palsy. “Appointments” were made as we passed each other in the market buying supplies for our meals, or in passing along the many footpaths. One of the children had moved, so when I went to his old house, the neighbors kindly escorted across the village to his new home.
Other village visits were made to follow up on patients seen in the hospital. One mother came twice to the hospital, but kept forgetting the child’s braces. So, Alex and I set off to find her at her home (2 hours away). Other patients are followed when they go home by the community health workers who have training in rehabilitation. They do support the patients with chronic illnesses/conditions – and can send text message questions to Alex if they need guidance.
January 16, 2017
There are many things that fill me with joy in Malawi. I’m thankful that I have had these experiences and that I can take their memory with me so that I can relive the joyful moments:
Birds singing at 5 am – unbelievable songs in a chorus
Beautiful birds with long tails in the swamps
Roosters crowing at 3 am – not so beautiful, and somewhat comical
People carrying stuff on their heads – anything and everything
Silence in conversations – the comfortable quiet in a group of Malawians
Children running with me – barefoot, carrying something and still racing me down the trail
The minibus squeezing – always room for one more
“Azungu bho, bho” greetings shouted from afar (no need for a doorbell)
Kids playing all day on a fallen tree – happily occupied
The unexpected “hallway” referrals that keep me on my toes
Light at 5 am
Buckets of rain
Hurry up and wait, and wait some more
Jumping over a river and being caught by Alycia
Enjoying Melody and Alycia’s special curry dish
Laughing with the Malawians as we try to get the charcoal stove lit
Watching Samantha fearlessly bargain with the craftsmen in the Lilongwe market
To be continued…..
January 16, 2017
I loved having students with me this year in Malawi – three final year students from the University of the Pacific and one second year student from the University of Malawi/College of Medicine. The University of the Pacific students blogged during their two weeks Beyond Pacific . I learned a lot this year about teaching in the clinic. One of the most important principles that I relied on this year was the idea of giving students space…not too much so that they feel insecure, but enough to grow. It is a constant give and take that went well with all the students. With space, Samantha’s confidence grew during her first experience outside of the US. As her confidence developed, her caring and compassion was so evident to all. With space, Alycia showed how she was flexible and open. She courageously expanded her comfort zones, accepted challenges without hesitation and unselfishly supported others. With space, Melody’s solid clinical reasoning and intuitive handling became clear as she settled into the hospital routine. She was full of wonder and discovery. With space, Ruth evaluated her first patient and showed her remarkable potential to be a great physical therapist. She was smart and inquisitive – earning my respect and the respect of the medical team at the hospital.
Thank you for becoming part of your patients’ stories, and for working together with me to create a caring environment where we can all learn and serve others
What a bright future!