Disability Detective

Today I visited Chey Chumneas Referral Hospital in Kandal Province, near the Ta Khmau roundabout a short drive south of Phnom Penh, with my friend “Samantha” and  her severely disabled son who I will call “Alex”.  He is 3.5 years old now, immobile, contracted, unable to speak or even so much as turn his head, yet very alert and observant.

Chey Chumneas

Her intimate involvement from the day Paula arrived into our TB Department’s care, through to her surgery in Seattle, appeared to make Samantha acutely hopeful of a similar miracle for Alex.  During the same months that Paula lay on her hospital bed in our department, hopeless and dying, Samantha was recognising something wrong with her tiny first-born baby.  We shared an office at that time and I often found her at lunch time, sitting at her computer researching the symptoms becoming increasingly apparent as Alex began to skip various developmental milestones.  In recent months I have observed Samantha coming to terms with the permanency of his condition and her hopes transition to a more realistic search for assistance in making Alex’s life more comfortable.

Information is hard to come by in Cambodia.  Multiple internet searches for various combinations of paediatric-disability-health-services offer misellaneous results, none of which serve much practical benefit to someone looking for help.  After learning that Caritas are connected to the disability service we visited today, when I search “Caritas Ta Khmau”, no result tells me they are in Ta Khmau, let alone what they are doing there.  A search for “Caritas Cambodia” brings up their page, showing a range of programs but nothing connecting them to a paediatric disability service anywhere in the country. [Caritas Cambodia].  The same happens even on a search for the very words written on the facility building, “Comprehensive services for children with special needs“.  It seems literally impossible to know, except via word of mouth, that this service exists.  Thankfully Samantha, a functional mother and a literate, trained nurse, did learn about the facility when she took Alex to another service in search of assistance.

Comprehensive Services 02

Comprehensive Services

This was Samantha and Alex’s second visit.  The appointment system appeared planned and methodical.  Last month a local paediatrician spent time with Samantha, listening to Alex’s history and assessing his clinical status.  Today was an Occupational Therapy assessment with a young and well informed OT.  After spending a significant amount of time listening to Samantha, asking questions and taking notes, she got on the floor with them and taught Samantha a number of useful strategies for positioning, lifting and holding Alex.  He is regularly distressed, apparently due to pain and he does not sleep at night.  The OT suggested that he may have more severe muscle pain and/or spasms at night and she recommended “nesting” him.  Tonight Samantha sent me a photograph of Alex nestled between pillows, ready and hopeful for a night of sleep.  Given the family’s collective exhaustion, I am hopeful that this simple but brilliant concept may give everyone some respite.

Services such as this are not conspicuous here, as they are in countries like Australia where departments and organisations have a much higher visibility and accessibility courtesy of a more inclusive and better resourced health system.  Data for Cambodia is unreliable but disability rates are probably at least as high as 5% of the total population living with at least one physical or mental impairment.  At the same time there are extremely limited services available to disabled people, who are often forced to resort to begging as their only means of income.  Samantha’s husband earns a reasonable local salary meaning they are able to afford the transportation to Ta Khmau for monthly appointments.  Many Cambodians are not so fortunate.  Knowing about the service, and being able to access the service, appear to be two of the fundamental problems for parents with disabled children who are already living with poverty and stress which exacerbate these obstacles.  Handicap International published a Disability Facts in Cambodia Briefing Paper in 2009 which goes some way to describing the situation.

One of Samantha’s next challenges is to find out if there is some way to access an appropriate wheelchair for Alex.  Unlike Australia, where services connect with each other and relevant referrals are common inside a networked system, the staff at Chey Chumneas were unable to offer any advice in this regard.  If even one person connected to a disabled child in Cambodia accesses the Paediatric Special Needs service at Chey Chumneas in Ta Khmau courtesy of this blog,  then these 800 words were worth writing.  An integrated list and description of the services available in Cambodia for disabled children, published online in English as well as Khmer and made available across the services, for providers and clients, would be even better.

Perceptions of Peril

My right eyeball became acutely aware that it was aligned with, and traveling at a speed of knots towards, a steel rod hanging perilously from the back of a truck on Cambodia’s National Highway 7.  As my face came within arm’s length of the pole pointing menacingly at it, our taxi veered left into a narrow space between the truck to our right and the median strip to our left.  If only I could speak Khmer, I’d have compared the danger of our road trip with the safety of flying in an aeroplane, to Paula’s mother.  She has made and continues to make, untold sacrifices for this one of her eight children who has been rubbing shoulders with the afterlife for 4+ years now.  One of the biggest perceived risks she is now prepared to take, is embarking on an international flight.  Aeroplane travel is not something she ever imagined she would experience and she would prefer if it were possible to drive from Cambodia to America!

Yesterday morning my final visa preparation chore was a dash to Handicap International who have been such a great and helpful organisation, to plea for the loan of a wheelchair.  An elderly stroke victim and a number of amputees were mobilising on the physio bars as babies were held by waiting parents to be seen in the busy rehabilitation area.  Relieved to be recognised by the right people, a finger pointed to the nearest appropriate looking chair, then a dismissive wave when I tried to offer identification or guarantee with a call to “bring it back tomorrow!”.  Once again Paula refused to eat pre-travel.  On arrival at the hotel, she insisted on walking the 10 metres from car to hotel reception, causing another faint.  She spent the afternoon resting and eating but again this morning, due to the early Embassy appointment, she refused breakfast.

The US Embassy in Phnom Penh is an attractive cream-and-black modern building garrisoned by high steel sharp-tipped picket-style fencing.  Massive satellite dishes furnish the roof and lawn inside the fence where Stars and Stripes fly in obscurity behind the high security structures.  Uniformed guards monitor the perimeter path on foot and by moto.  The block-sized fortress sits in the shadow of Wat Phnom, an ancient Buddhist temple atop a small hill north of the city centre.  The city’s only two skyscrapers tower over it from the other side.  The grand century-old Raffles Hotel le Royal is located a short stroll across a lush strip of parkland.  This small area of the city could fool you into thinking you’re in a wealthy country.  Until you see the hand-pulled scavenging trolleys piled with recyclables making their measly living, or the cyclos pushed by men with faces so wizened that they could be 100 years old.  Only a privileged few in this place, get to enjoy their dotage.  At both ends of the spectrum, age does not preclude you from having to earn your daily rice.  In the countryside the peers of these labourers are in rice fields or husking mountains of corn.

In a rush of confusion upon registering at the security window, I was, as suspected, denied entry and suddenly found myself waving reassuringly as my three anxious companions disappeared through the heavy iron door.  I crossed the road to say hello to Samantha’s family who had accompanied her en-masse to her very exciting visa interview.  Her young son, almost two years old, was limp in his grandmother’s arms as she sat on the pavement.  His cerebral palsy has led to severe malnutrition caused by frequent vomiting.  His hands are clenched permanently and his little arms and legs are wasted away.  Despite her own heartache, Samantha is excited at the prospect of a trip to America and told me last night with tears in her eyes that “first I will worry about Paula, then I will focus on my son”.

It was three hours before we laid eyes on each other again.  My tuk tuk friend drove me to a pharmacy where I located some Vaseline for Paula to use on the acid-scorched skin around her abdominal wounds.  We then drove to an Islamic restaurant to get some Halal food so that she would have something to eat as soon as she exited the Embassy.  As I noticed the massive mosque complex in this neighbourhood for the first time, two Buddhist monks in bright orange robes under yellow umbrellas strolled underneath the crescent-moon-and-star-topped minarets towering towards the clouds.  After posting a picture of this symbolic scene on Facebook I learned that the temple, funded by a Dubai-based businessman, opened earlier this year and is the biggest mosque in Cambodia.  Stopping at the gate so I could photograph it, an Islamic man approached my driver to tell me I was welcome to go inside.  With nothing to cover my head, I declined the invitation until another time.

I later read that Al-Serkal Mosque was inaugurated by Prime Minister Hun Sen, during which he spoke of Cambodia’s religious tolerance.  From my observations living in a Cham populated area, I would have to agree with him.  Which by no means makes me a supporter of his other political views.  Paula lives directly opposite her village mosque, a large and beautiful temple.  It is common when visiting her, to see men and women arriving for or leaving from prayer, dressed in full Islamic regalia, including women in niqab with only their eyes visible.  This doesn’t stop them from offering waves as they shout “hello” in English, or from slowing or stopping to watch the unusual visitors with curiosity.

Returning to the Embassy with takeaway containers of rice and beef, we parked over the road to wait.  We sat diagonally across from each other in the tuk tuk, our legs resting on the seat opposite as a footstool.   The topics of wealth and poverty monopolise conversations in this country of extreme contrasts.  Even more so this morning in this prime location where the power of a wealthy minority imposes visibly over the toiling and disempowered majority.

At almost three hours to the minute since they disappeared out of sight, Tuk Tuk suggested I might want to climb Wat Phnom?  Just as he spoke the words, Samantha, Paula and her mother exited the main building and made their way towards the roadside security exit.  Tuk Tuk drove around the block to park up beside them while I crossed the road to greet them.  Upon sighting me Samantha broke into a wide grin and threw her thumbs into the air.  Visas approved!  The excitement of the moment was overshadowed by Paula’s visible exhaustion.  Mum helped her into the tuk tuk while I showed Tuk Tuk how to fold the wheelchair which he hoisted onto the floorboards between the seats.  Samantha and I climbed in behind the wheelchair and we high tailed it to the hotel to get Paula horizontal asap.

Inside the Embassy everything had gone smoothly until Paula  had to stand up to be fingerprinted.  She immediately fainted and a doctor was called.  He wanted to postpone her interview until another day but meeting with serious resolve from three determined women, he agreed to allow her to persevere.  There was no doubt of the authenticity of the visa request and everything was approved promptly.  This afternoon she has been resting in bed and eating French Fries, which she has ordered as a takeaway breakfast for the morning taxi ride home!  We are all in a permanent state of exhausted elation.  All that is needed now, is to get a blood transfusion sorted out for Paula pre-flight, and put our travel arrangements in place, which is being done from New York.  My October departure from Cambodia has been known for years.  What wasn’t known until today, was that I’d be returning home to Australia via a mercy dash to the US West Coast.

Various other updates to follow, but I needed to post this amazing news.

Cupcakes and Prosthetics

The bone on Dara’s amputated leg continues to grow, and will continue to grow into his early 20s.  It pushes through the stump, eventually causing pain and becoming infected.  Recently he has been in a  lot of pain from a recurring infection.  The repercussions of this include a lot of missed school, loss of appetite with accompanying weight loss and inability to wear his prosthesis due to the pain.

Bone growing through the below-knee amputation of a 6yo.
Bone growing through the below-knee amputation of a 6yo.

I can often have conversations with Mum and Dad via broken Khmer and various miming / sign language.  Sometimes I wonder if we think we understand each other whilst actually talking about entirely separate matters and we have a lot of laughs together.  The other day, talking to Mum, we didn’t understand each other so I pulled my phrase book out of my bag, found the word I needed, and pointed to it’s Khmer script.  She looked briefly, before explaining to me that she cannot read.  I called Win for a translation instead and he informed me that her 14yo daughter had gone to Phnom Penh “to work in a house as a servant”, for a salary of 300,000 riel (US$75) per month.  Later in the day I texted Win to thank him and said “I’m so sad for that daughter”.  His reply: “I think it is normal here for the poor.  Just try to help when possible”.  This morning we drove past one of Kampong Cham’s mansions and Mum pointed to it, explaining that at the age of 14 she worked in this house as a servant.

For a few weeks now, conversations with Mum and Dad have been about an operation on his leg.  Our language barrier makes it really hard to get a detailed picture of what is going on but yesterday I knew the appointment was today and that Mum was going to carry him on her hip, the c.2km to the appointment.  So Chom met me at Shackville last night to discuss the situation.  Chom agreed to transport them to the appointment and after some discussion Mum and Dad both expressed some anxiety about the cost of the operation.  If they travel to Phnom Penh they are away from work, losing $4 per day and have to pay for their transport costs, but the operation is free.  If the operation can be performed here, they have to pay the hospital costs which could be as much as $50, which they don’t have.  While I stress about which Spanish language school I can afford to attend in Spain, these people can’t afford basic health care!  Chom suggested that I attend today’s appointment with them, to get a better idea of what is being planned, so that I know exactly what help is needed.  So at 7am today he picked me up en route to Shackville, where Dara and Mum boarded the tuk tuk and off we chugged to the Handicap International Rehabilitation Centre.

Handicap International is an excellent NGO who are, according to their website, “an independent aid organisation who work in situations of poverty and exclusion, conflict and disaster.  We work alongside disabled and vulnerable people on 327 projects in over 60 countries worldwide”.  Two French doctors were working in 1982 at Khao I Dang (“KID”) Refugee Camp across the Thailand border where many thousands of Cambodians escaped to during Khmer Rouge rule and subsequently during the Vietnamese occupation and war.  Friends and colleagues have described their experiences of attempting to travel to, or spending time at, this camp.  One in particular tells of crossing landmine-ridden fields to reach the border, before being shot at by Thai border guards and having to run back into Cambodia, past the stench of dead bodies and hearing landmines explode around them.

These doctors began fitting thousands of injured Cambodian refugees, mostly landmine amputees, with prostheses.  The doctors trained local people, set up rehabilitation care for refugees in this and other camps, and Handicap International was born.  When refugees were repatriated home to Cambodia in 1993 Handicap International went with them to ensure their access to necessary services continued.  The organisation grew into a broad-ranging disability service across a number of provinces in Cambodia, and extending to other countries with similar humanitarian needs.

Today 1 in 5 of Handicap International’s clients in Kampong Cham are landmine victims (there are still thought to be up to 10 million unexploded landmines on over 700 square kilometres of Cambodian soil today).  Many other amputees, including Dara, are victims of road traffic accidents.  The organisation are still involved in mine clearance, as well as road safety programs, disability-related mother and child health, supporting local rehabilitation centres, integration of disabled children into schools and various other disability-specific projects.  Their work as a founding member of the International Campaign to Ban Landmines which led to the Mine Ban Treaty, saw them awarded with the Nobel Peace Prize in 1997.  As with so many humanitarian aid agencies, they rely on private donors to sustain their activities.  Their  most recent annual report can be found here: http://www.handicap-international.org.uk/Resources/Handicap%20International/PDF%20Documents/HI%20Associations/RA2013-FED-en.PDF

On arrival Dara was given a triage number before moving to the waiting area near the physiotherapy and prosthetic production area, up a long ramp.  At the triage area a young woman appeared and sought me out with “Good morning Madame!”.  Sometimes people just want to say hi, so I replied in kind.  She then asked me “Do you remember me?”.  I studied her face and realised it was the groom’s sister from the wedding outside Skun two weekends ago!  She was en route to work and recognised me so stopped to say hello.  A number of mothers and babies with no apparent physical disability were there, and also a number of other amputees with prosthetic legs and other disabilities.  A man in a white coat came out to talk with Dara, asking me if I was an Occupational Therapist.  I explained with Chom’s assistance that I was a family friend.  The man then attempted, unsuccessfully, to put Dara’s prosthesis on, before disappearing and returning with a set of crutches and lessons in how to use these began.  Dara was very excited, repeatedly calling to us to look at the frog hopping!

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Waiting for arrangements between doctors here and Phnom Penh may take all day so we decided to leave Mum and Dara there and Chom will pick them up later.  We went via a local restaurant to buy breakfast for Dara and a recharge card for Mum’s phone so that she can call Chom for pick-up.  Upon our return a vendor selling fruit and sweets from a round tray on the back carrier of her bicycle was parked on the path nearby.  Dara was eyeing off some coconut and sticky rice “cakes” in banana leaf cups.  For 25c I bought him two of these, one of which he devoured in the blink of an eye.  Chom passed the phone charge card to Mum, then received it back from her and punched the numbers into her phone “because she doesn’t know how to read the numbers”.  As we left Dara had a very big smile on his face, devouring cake and talking about the cars in the playroom a few metres away.  Entering the ramp on our way out, a complete stranger stopped me and placed a plastic bag steaming with six cobs of hot corn into my hand.  Chom translated that “In his village there are a lot of corn and he want you to eat it”.  Six cobs of corn!  Luckily it’s easy to find hungry beneficiaries around these parts, so they didn’t go to waste.

Coconot sticky rice cupcake in a banana leaf cup
Coconot sticky rice cupcake in a banana leaf cup