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Haiti 2013: Diabetes Management and the Magic of Laughing Children

By Dr. Francine Kaufman

Chief Medical Officer

Posted:  4/11/2013 3:58 PM

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Editor’s Note: Last year, we shared with you a three-part-series from Dr. Francine Kaufman about her experiences visiting Haiti in the aftermath of the 2010 earthquake and helping with their first-ever diabetes camp (Return to Haiti Part 1, Return to Haiti Part 2, Return to Haiti Part 3). This year, Dr. Kaufman and her husband – Dr. Neal Kaufman – returned to Haiti to help children with diabetes without aid.

We arrived in Port au Prince two days ago and could immediately see that things in Haiti had improved since our visit one year ago. The airport runway and unloading docks were devoid of the clutter we saw last time and we entered a just recently opened terminal that was much more like other developing world airports. Clean, sparse, with what you’d expect at an airport – a baggage claim section, small restaurants, clean bathrooms and an easy exit to the parking lot--- not like the past when you had to walk past 200 people all trying to “help” carry your luggage, find you a ride, etc. The trip to our hotel also showed that Haiti is improving after the earthquake. More roads were paved, most of the rubble was gone, some of the collapsed buildings had been removed, and we even saw a few new construction sites. The streets are still crowded with people and commerce. Most people in Haiti make money in the underground economy so getting around is key to their existence.

We are almost finished with the first day of our second diabetes camp in Haiti. This year we are in the North, along the beautiful coast and in what could be considered a resort. The ocean view is magnificent, the sandy beach narrow but calm, and the vegetation luscious. For a minute, we could almost forget we are in Haiti, but when we focus down on the hotel that is housing our camp, the people all around, and the children with diabetes, it is impossible to escape reality. The hotel is pretty run down, the menu replete with goat and conch, and the healthiest thing to drink (or eat) is Coca Cola.  The children – our campers – are amazing. Many of them are away from home for the first time. They have never been to a hotel or a restaurant. Some of the little ones have come with their parents, both because we don’t have the staff to take care of them and also because their parents are too fearful to leave them. When the 43 campers first got to camp, they sat patiently in their chairs for over 45 minutes while we assessed their diabetes and overall status. It was boring, but not one of them complained. At lunch, they stood quietly in line while we doled out their food. When limited seconds were offered, there was a rush to the table as if they feared this might be their last protein-replete meal for ages. This broke our hearts last year, and it is not any different this time around. And again like last year, many did not take their insulin the morning they arrived in camp. Most left home at the crack of dawn – by themselves – and they weren’t sure when they would arrive and what food we would have. So they treated their constant food insecurity the way they usually do – by not taking their morning insulin injections.

I suppose the most shocking thing today was that we had to show the kids how to use their bathroom and shower. Many had never seen a fully equipped bathroom with a toilet, sink and shower together. Many still live in tents, the estimate is that at least 300,000-400,000 people are still in tents in Haiti (down from over 1.2 million right after the earthquake and 700,000 when we were here last year), and many others have been moved from tents to prefab 12X12 plywood houses with no electricity or running water. This is a better option but certainly not a long term solution.

We had an Easter egg hunt this afternoon; the kids dove at the eggs as if their lives depended on it. Then we had a ceremony where kids were given candles, and after they talked about their diabetes and made a wish, they blew their candle out. It was heart wrenching to hear about their fears of rejection, complications, and mortality. In many ways they sounded just like all the other kids around the world facing this disease, but then they talked about not being able to get to the doctor, or not having all the medicine they needed, and they distinguished themselves as being different – being Haitian – from most others across the globe. One of the more poetic and beautiful descriptions of a life with diabetes was given by a tall and stately 19 year old girl. Between crying about how hard diabetes has been for her and her family, and how they are all so worried about her future, she described her diabetes as her identical twin sister – she is always there and they have a special bond that only identical twins can have. She tries to care for her "twin" but sometimes she has a mind of her own...hard to control, hard to love, no matter how close the bond, but one who will be with her for as long as she lives. Looking through their medical charts that came with them, most have A1Cs > 14% – a mark of truly uncontrolled diabetes and a predictor of poor long-term outcome and early death. We get encouraged if one of them has an A1C of 12.5% (still not good at all) and the few with lower values are those who are newly diagnosed and expected to have a lower A1C, or amongst the limited number of them with greater family resources.

We are joined – as always – by the amazing Evelyne Fleury-Milfort, from Los Angeles but born in Haiti, and the family of Nancy Larco, the head of FHADIMAC, the Haitian Diabetes Foundation that sponsors this camp and all of our efforts in Haiti. They are slowly transforming how diabetes care is provided in Haiti and enabling these kids to survive. AYUDA, the international youth empowerment organization in the developing world that we helped to start over 15 years ago with a camp in Ecuador, is here in the form of Merith Basey and she makes camp magical. Merith brought a psychologist from the Dominican Republic who is engaging the kids perhaps at a deeper level than we did last year.

We’re bug-bitten, sticky and sweaty, covered in DEET and taking malaria prophylaxis. No water – unless it is bottled and boiled – crosses our lips, cholera is still in Haiti. But as in previous trips, there is something magical about being here… about being with these kids, about helping them learn to manage diabetes under the most dire circumstances and seeing them play and laugh.

Editor’s Note: To hear more about Dr. Kaufman’s most recent trip to Haiti, check out Haiti 2013: Diabetes Management and the Magic of Laughing Children Part 2. For those of you in the community that would like to make a donation to help transform the lives of children in Haiti living with diabetes, you may do so by clicking here. Be sure to select “Communities Rising” from the drop-down menu before making a donation. Your donation will go directly to help run diabetes camp again next year, hire and train more young adults with diabetes, provide needed insulin and blood glucose testing materials, and build a country-wide system of diabetes education and care.

Comments

Suzanne Appel

Posted on Fri Apr 12 19:27:59 GMT 2013

Thank you for all your great work to help the children in Haiti. I was sad to hear that 400k people are still living in tents. I wonder how the large orphanages are managing to help their children with diabetes. I was especially touched by the description of diabetes being like a twin sister and that love/hate relationship. Thank you for sharing.

Susan Muller

Posted on Fri May 10 21:38:42 GMT 2013

God Bless Dr. Kaufman, all these wonderful people who work with these young Diabetics in Haiti; As a Type 1 diabetic for 36 years ( since the age of 14), I surely appreciate what they do, for these kids! I am going to donate to this wonderful cause. These young kids in Haiti ( and elsewhere) deserve a fighting chance for a future, whether they are diabetic or not!

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