Wheelchairs at the Beach

Hard to believe that today is our last (full) day here in Haiti.
(barring any unforeseen circumstances at the airport).

After breakfast this morning, we gathered our swim gear, put the folded wheelchairs in the back, and boarded our freshly painted bus on our way to

a nearby beach. When I say "nearby", that's a relative term (the trip took about 70 minutes each way).
On the way to the beach,  the bus was filled with singing in a call and response fashion. They tried to teach us some of their songs in Creole, but we never quite got the hang of it (though we could clap).

The beach was rocky, and the water had all sorts of surprises (jellyfish, sea urchins and some sharp rocks) but most of our group got through it unscathed. The wheelchairs were brought to the edge of the water and caregivers (as well as Dr Forsythe) grabbed children out of the chairs and carried them into the water to splash and play.

After some lunch at the beach, we boarded the bus and drove back to Zanmi Beni, where an impromptu dance party took place.

Our last dinner here consisted of pasta with pesto (Thanks, Trader Joe's) and dessert was Nutella Fondue with apples, pineapples and bread (delicious).

Tomorrow morning, we'll have breakfast, pack up, then head to the airport where we expect to have to go through 5 separate inspection stations on the way out of Haiti (Much easier to bring things into Haiti than out of Haiti, I guess).

It's been a wonderful, meaningful, eye-opening trip for both of us. We've been asked to come back, and we're already thinking of ways that we can be of further help to the children of Zanmi Beni, the children with disabilities across, Haiti, and the people who provide them with so much love and care.

Thanks to all of you who raised money, gave donations, and sent us messages of support. The people here have been very grateful to have us here and we are grateful to you for making this trip possible.

Bonswa !!

Touring Haiti

Today, our group left Zanmi Beni after breakfast and headed to the nearby US Embassy.

Don't have any pictures of the inside of the embassy as we were not allowed to bring phones or cameras past the first security checkpoint.

After having our passports reviewed and going through a TSA-like scanner, we were escorted to another building on the embassy grounds and then went through another security checkpoint with the heaviest doors I've ever tried to hold open (I can imagine that when these doors are closed, these doors are closed).

We were escorted upstairs to a seating area and spent the next 1-2 hours in a question and answer sessions with several of the embassy's officers who described their roles in Haiti and their lives as professionals in the Foreign Services.

We then enjoyed lunch at a nearby outdoor buffet (on the site of a former sugar cane plantation) which appeared to be frequented by both Haitians and non-Haitians alike.

After lunch, we made a quick side-trip to a metal artisan's shop where we bought several pieces of tin artwork direct from the artists.

We then boarded our vans for a long, bumpy, and winding trip up over the mountains to Mirebelais, avoiding numerous potholes, people, goats, and other obstacles along the way. Here's a view out our (tinted) front windshield.

We had some gorgeous views of the valley below, as well as of innumerable shacks in various states of disrepair.

The recently completed hospital at Mirebelais is a beautiful facility, with an emergency department, numerous inpatient units (one for men, one for women, and one for children).

While their outpatient clinics are already up and running, they are still working to get the inpatient units going. 

We also got the chance to go up on the roof of the hospital to view the many solar panels that have been installed to help power the facility.
 
                                                 


After  a slow and bumpy descent down from the mountains, we enjoyed dinner at a pizza restaurant (Pizza Amour in Port au Prince - we highly recommend it) and then drove back to Zanmi Beni, past the nightlife that could be seen on almost every street corner in Port au Prince


                                                 

Time to rest up now.
Looking forward to another exciting day tomorrow.

Bonswa !!

Pediatric Disability Conference

Today was a special day, as Zanmi Lasante hosted the 1st Annual Pediatric Disability Conference for caregivers from all across Haiti.

Over 40 therapists, teachers, nurses and other caregivers came for the day-long conference, which was opened by the Gerald Oriel, Jr, Haiti’s Secretary of State for the Integration of Persons with Disabilities.

Next was a lecture by David Charles, the Coordinator for the Adaptive Materials Bank, about the appropriate way to interact with people who have various disabilities (wheelchair users, people who are deaf, people who are blind, etc).

After that, I gave a talk entitled "What Every Caregiver Needs to Know About Cerebral Palsy" which included a mixture of pictures of patrients from the US as well as photos of several of the children here at Zanmi Beni.

After my talk, we had a question and answer session that ranged from what causes spina bifida, to wether a seizure disorder is contagious.

Conference participants  then took a tour of Zanmi Beni, followed by lunch of talapia (they have a talapia farm here that feeds residents and workers and also brings in money through sales to other organizations, plantains, rice and beans, and watermelon.

After Lunch, Dr Forsythe and I went to the physical therapy gym where we evaluated children from farway villages  whose parents had brought them to be seen as part of the conference. We saw several interesting cases including one boy with disarthria who appeared to be tongue-tied (he was referred for possible frenulum release) and another girl with Down Syndrome.

The last case of the day was the most impressive, as a man brought his 26 year old daughter who, over the past 7 years, had worsening swelling of her body and a growing mass in her abdomen. We told him that she appeared to have Cushings Syndrome which might be related to a tumor (the growth in her abdomen) that was releasing too much cortisol into her body. Our hosts took their information and said that they'd work to get an imaging study of her abdomen and the appropriate blood tests and follow-up.

All in all, it was a very productive day, and we were repeatedly thanked by hosts and attendees for coming here.

Tomorrow, we're scheduled to travel to the US Embassy as well as to Partners in Health's new hospital in Mirebelais (about an hour away). Should be an interesting trip.

Bonswa !!

Therapy

Today, we spent time in the therapy gym at Zanmi Beni.

 The gym is actually a converted porch/sun room, with (relatively) cool breezes blowing in through the screen doors and windows. They have an old radio for music and a TV that played a Harry Potter video during the evaluations

Dr Forsythe and I met with two physiotherapists who work with the children there each weekday and we evaluated ~10 of the children.

 No one seems to wear shoes or socks around the orphanage and the shoes that they do wear most often  are sandals and Crocs. Here's a child wearing hand-me-down AFOs that were donated to the orphanage.

Here, I spent time demonstrating stretching techniques that they could perform and teach to others at the orphanage.

Our discussions with the therapists were limited by language barriers, but Dr Forsythe was able to use Google Translate (English to Creole and Creole to English!) to facilitate communications.

We found children who had visual impairment, hip dislocations, spasticity, scoliosis, club feet, hydrocephalus and more. We saw several who have outgrown their wheelchairs and took some measurements to see if we might find better fitting equipment for them back in the States.

Bon Apres Midi (Good Afternoon) !

Mother's Day

Woke up (at 5:45 AM)  this morning to the sound of toy trucks on concrete outside my window, and came to the conclusion that setting an alarm clock here at the orphanage will no longer be a nightly practice.
The young children running up and down the walkway were some of the 20+ non-disabled children who also live  here at the orphanage along with the 30 or so children with disabilities.

After a quick breakfast, I went out to join them in play. Then we played some more , and then some more.

The group of children who have disabilities are usually brought together outside in the morning, where they sit with their caregivers.  The ones who need wheelchairs are dependent upon others to take them around, to the table where arts and crafts are set up, to the slides and  swings.

A little girl in a wheelchair caught my eye. While her body struggled to move, she was quick to watch and listen to others. She was also quick with a smile and laughed as I pretended to make my tape measure work by blowing on it (an old exam room trick). We later played on the swings, the slides and enjoyed a special cake in honor of Mother's Day here in Haiti.

It's only been one full day in our visit, but I'm amazed at how comfortable all the chldren seem to be with our group, holding out their arms to be picked up, calling us "Papa" and "Mama" as they point at things they want to get or do. They are obviously loved and well cared for here, but my heart goes out to them knowing that they don't have a family to enjoy.

Or maybe they do.

During the Mother's Day celebration, each child was asked to come up and sing a song or recite a poem. Each was introduced by the Director of Zanmi Beni, and while each child had a different first name,  they all had the same last name - "Beni". There was Carl Beni, Jordan, Giselle and Patrick Beni. All share the same last name, the name of the family that loves, care for, and supports them - Beni

Happy (Haitian) Mother's Day.

Bonswa

Greeted By Angels

Woke up at 4 AM today to get to the airport for an early morning trip to Miami. After an uneventful flight, we had a quick early lunch in the airport and then boarded a plane to Port au Prince.
After another uneventful flight, we collected our bags, and walked out of the airport into a chaotic scene of people shouting, pointing and otherwise trying to get us to take their transport.
We boarded the cars already waiting for us there and started out  on a 3 mile journey that, because of "creative traffic maneuvering" by cars, trucks, buses, Tap Taps (look it up), motorcycles and people just walking into the street, took us about an hour to arrive at the Zanmi Beni orphanage.
When we arrived, everything else was quickly forgotten when we parked next to a playground full of children who, as we stepped out of our cars, ran up to us with arms extended, asking to be picked up/
We spent the next hour happily holding, hugging, and playing with smiling, laughing children.
It was like Angels Welcoming Us To Heaven.

It's been a long day of travel and most of us are ready for bed.
Tomorrow morning, Dr Forsythe and I will begin evaluating the children and offering suggestions about ways to improve their positioning, feeding, comfort and function.
It should be fun.

Bonswa !

1......

Today's the last day before our trip.
In less than 10 hours, we'll be meeting the rest of our group at the airport.
An early morning flight to Miami, and then a connecting flight to Haiti and we're there.
In a different world.

It'll be a different climate (current temperature in Chapel Hill = 65 degrees, Port au Prince? 95 degrees).
It'll be a different language (Haitian Creole - thank goodness for intepreters and Google Translate).
It'll be a different culture.
It'll be a different level of resources.

But much will stay the same.
We'll evaluate children who have disabilities (and strengths)
We'll meet caregivers who hope for a chance that these children will one day be more independent.
We'll interact with therapists who work to make lives better for the children they serve.
and we'll have the opportunity to help others.

Wherever you go, and whatever the climate, the language, the culture and the resources, there's always that - the opportunity to help others.

Bonswa !

2

Only 2 days left until we leave for Haiti !
Still a few more job related responsibilities tomorrow (an on-site planning meeting at our soon to open 25,000 square foot UNC Center for Rehabilitation Care, completing some patient notes on WebCIS, our our online electronic medical record) with the remainder of the day to be spent spraying my clothes with permethrin and packing for our trip.

Today was my last clinic day B.H. (Before Haiti) and it brought with it some experiences that made me pause to consider what is in store for us over the next week.

• One of my patients this morning had spasticity, an increase in muscle tone that is contributing to the development of contractures (tight tendons) around his knees. After discussion with his mother, we pulled some botulinum toxin out of its storage freezer, mixed it into some saline and injected it into his hamstrings to temporarily loosen those muscles and enable his family and therapists to more effectively stretch out his muscles and tendons. How easy for me to choose this treatment, prepare it, and administer it to my patient(s) !! I don't think botulinum toxin's (widely) available where we're going, and wonder just how beneficial simple range of motion/stretching exercises are going to be for the children I'm going to see very soon.
• Another patient also led me to think forward to my upcoming encounters with the children at Zanmi Beni Orphanage - I was asked to see a 40 day old infant with spina bifida (a congenital condition similar to a spinal cord injury) who had  also been born 10 weeks early. As she lay in her father's arms, I examined her and was happy to be able to tell her father that, although she might need braces on her legs and crutches, she  should be able to walk and not have to use a wheelchair to get around the community. His tears of joy (he had assumed that she would always have to use a wheelchair) made my day. Later, I wondered about what might have happened to this girl had she been born in Haiti instead of the United States. What are the chances of survival for a Haitian child born so premature? Even if she survived, would she ever receive the equipment or therapy she would need to become independent in her mobility? 

I often lament the ills of our mismanaged healthcare industry, but I also recognize how lucky I am to live and work here in the United States. We are so blessed to live in a country where healthcare resources are so readily available. It's going to be quite a challenge to see how I can serve children with disabilities in a country that is not so very rich. But it's a challenge I'm thankful to have.

Bonswa (Good Evening) !

3

Can’t believe we’re now just three days away from going to Haiti !!

It seems like only yesterday that I heard about Zanmi Beni, an orphanage for children with disabilities located just outside of Port au Prince. Now, our departure date is so close that I can almost taste the Tilapia (more on that later).

The UNC Department of Physical Medicine and Rehabilitation has wanted more international involvement by its faculty, so I discussed the possibility of going with our department administration and got the go ahead as long as I could get sufficient funding to cover my costs. Through the help of the NC Children’s Promise staff and the generosity of more than 40 kind donors, we’ve raised enough money for me AND a resident physician (Dr Nicole Forsythe) to make this trip.

Dr Forsythe and I have gotten our vaccinations (for Hepatitis A and Typhoid), have gotten medicines to reduce our risks of contracting malaria and traveler’s diarrhea (NOT fun),  have made sure our passports are up to date (check) and have started packing the basics for our one week trip. There are no washing machines at the orphanage, so we’ll be packing some quick dry clothes and sink-soap along with our bug spray and mosquito netting (again, to reduce the risk of malaria).

We’ve been in communication with people in Haiti and they are arranging times for us to evaluate the children at the orphanage as well as to provide an educational program for mothers of children with disabilities in Haiti. We’re also scheduled to visit Partners in Health’s new hospital in Mirebelais as well as meet with folks at the US Embassy.

Right now, we’re focusing on gathering all the necessities (as well as a few gifts for the children at the orphanage) but we’ll be updating this blog on a regular basis to keep people back home aware of our activities.

Bonswa !  (Good Afternoon)