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lundi 16 novembre 2015

Bookish Nonprofit Founder Guides Team To Save Young Heart Patients In Haiti

This is the fifth and final post in a series from Haiti.
Owen Robinson made that connection with Haiti that so many I met here have when he was working for the Clinton Foundation in 2010. He got intimately engaged in coordinating earthquake relief on the ground, working closely with Partners in Health and other agencies. When it came time to return to his desk in the U.S., he realized he couldn’t do it.

Partners in Health created a position for him and he stayed in Haiti in a new capacity. One day while working at Partners in Health, he came encountered a girl, Samantha Cadet, who desperately needed heart surgery. She had a 5.5 centimeter hole in her heart called an atrial septal defect that impaired her general health, prevented her from growing at a healthy rate and threatened her life.
Moved by this, Robinson got on the internet, did a quick web search for the head of the Syracuse Children’s Hospital in his home town, found his email and sent him a note with a picture of the girl and photos of her medical charts. He caught David Smith on a train reading his email; he quickly agreed to have the procedure performed at his hospital at no charge.

Though Smith was later terminated in a scandal, Robinson will always remember him for his immediate, life-changing response. Robinson notes that not only did that response save Cadet, it gave him the false impression that finding someone in the states to perform these critical surgeries would be easy. Over the next year or so, he found about a dozen kids needing heart surgery and found opportunities for them to be treated, though none so easily as the first.
As the list of candidates grew outside the Partners in Health geography on the central plateau of Haiti, they and Robinson realized that this effort needed its own organization. So, he began the work of fundraising to create an organization that would organize his growing database tracking every child in Haiti with a heart problem and the Haiti Cardiac Alliance was born.

On Friday, I caught up with Robinson at St. Damien’s hospital in Port-au-Prince where he had organized a week of screenings and surgeries. It took hours of watching for me to appreciate that this quiet, bookish, white man from the United States with his laptop, cell phone and a local aid was really running the show. In the best tradition of Harvard, Robinson was reticent to admit that he had two degrees from the Ivy League school. He doesn’t need to boast or shout; he’s simply got the goods.
At least a dozen people were there to support, many with exuberant personalities and enthusiasm for the work. It was the magic in the laptop, however, that was the key. Robinson knew every child and had pre-screened them with local doctors so they could come in for a final screening with Dr. Peter Morelli, who is an Associate Professor at Columbia University.

Morelli took a short break for lunch and I had a chance to visit with him about his experiences in Haiti. This was his second visit doing echocardiograms to screen patients for surgery; his first trip was in 2008. He explained that the differences between 2008 and 2015 were not dramatic, but as he ticked them off, most of the improvement could be attributed to Robinson’s work.

He noted that this time, all of the patients had been better screened before his arrival. As before, he would see nearly 100 patients. This time, however, he felt confident that all who needed surgery would get it. On his prior visit, he saw 99 patients, about half of whom needed surgery. Although efforts were made, many had not received surgery when the quake hit 18 months later and they lost track of many of the patients as a result.

Morelli came to Haiti with an organization called Gift of Life International or GOLI, which grew out of an effort by Rotary Clubs around the world partnering to provide heart surgeries of the sort that Haiti Cardiac Alliance coordinates.

Rob Raylman, the CEO of GOLI travels about 300 days per year, accompanying the teams of volunteer doctors, nurses, surgeons, biomeds and Rotarians who volunteer to support them, was at St. Damien’s on Friday and he spent a few minutes with me describing their work and their history.
GOLI was born in 1975 when a Rotarian in Uganda reached out to a Rotarian in New York asking for emergency help in obtaining surgery for a little girl who had been mauled by a hyena. Robert Donno, the New York Rotarian, went to work. By the time he found help, the girl had already been helped by a Rotary Club in Australia, but the Ugandan said he had a little girl who needed heart surgery. Donno arranged it and the club began an annual tradition of bringing kids from Uganda to the U.S. for surgery, typically three or four per year.

The organization continues bringing children to the states for complicated surgeries, but also sends teams like the one I met, to developing countries around the world to perform surgeries there. With an annual budget of about $4.5 million, GOLI is helping about 1,000 children per year.
There have been two major inflection points along the way, explains Rotary volunteer George Solomon. In the early 1980s, GOLI identified two children in South Korea needing surgery. President and Nancy Reagan brought them to the U.S. on Air Force One. The media attention dramatically accelerated the growth of the organization.

The second inflection point was hiring Raylman, Solomon says. GOLI arranged 10,000 heart surgeries between 1975 and 2009. In the six years since, it has done another 9,000 he boasts. Solomon himself has made 32 trips as a Rotary volunteer helping with hundreds of cases in Haiti over the years, having just finished his tenure on the GOLI Board.

The GOLI volunteer team includes a surgeon from France, Francoi Lacour-Gayet, who will perform two surgeries per day for six straight days at St. Damien’s. The team also includes nurses from Boston Children’s Hospital and from Montefiore Hospital in the Bronx. Dr. Morelli is also a part of the team. Solomon and Florence Marc-Charles, a Haitian American, both come as Rotary volunteers.
Marc-Charles related a painful story that helped illustrate her role as a volunteer. Though she is an RN, she doesn’t provide nursing support. She provides whatever help is necessary to support the children and their mothers. (Morelli screened nearly 20 children; none came with their fathers.) On one recent mission, the mother got some tragic news. Her child’s heart disease was too advanced and could not be repaired surgically; her child would soon pass away. The woman “lost it.” She left her child, ran screaming from the room and threatened to kill herself. Marc-Charles scrambled to calm her, to have someone care for the child and then to make arrangements for family to care for the mother until she could come to terms with the diagnosis. Marc-Charles followed up later and confirmed the mother had not harmed herself or her child.

Robinson’s Haiti Cardiac Alliance is tracking that child and every child it can find with heart disease, whether or not they are candidates for surgery or not. Some will never need surgery. Robinson will also track those who have had surgery, following up to ensure that they get all of the follow up care they need to prosper.

One of the special challenges for Robinson is the Coumadin program. Patients who receive mechanical heart valves require daily doses of the blood thinner. The dose, however, varies from time to time based on blood tests. All the patients on the program, there are a dozen now, must check their blood daily and report it to a nurse who guides them on tweaking their Coumadin dosing. Before the Haiti Cardiac Alliance was formed, doctors considered it unethical to give patients the mechanical heart valves, despite the fact that they are good for life but the pig valves used as an alternative may need to be replaced after ten years. The thinking was that poor patients in Haiti couldn’t be counted on to manage their Coumadin. Robinson has made it possible.

Robinson concedes, however, that he’s just getting the “tip of the iceberg,” explaining that he estimates that there are about 10 times as many kids who have heart disease as he’s tracking. He thinks he has about 95 percent of those who have been diagnosed by anyone in the country’s fragile healthcare system, but recognizes that most poor Haitians never encounter any healthcare. He remains focused on ensuring that no child diagnosed with heart disease is ever turned away. Whenever he hears of a case, he follows up with the provider who turned the child away to make clear that Haiti Cardiac Alliance is there to support them.

The Rotary Club de Port-au-Prince was also there to support the GOLI team. Several club members turned out, include Brigitte Hudicourt, an ophthalmologist. She explained that Akron Children’s hospital is another key partner, providing teams to do follow up care after the GOLI team leaves.
Solomon, a member of the Rotary Club of Freeport-Merrick, proudly gave me a tour of the temporary cardiac ICU set up to care for the kids following their surgeries. The Rotary Foundation funded the purchase of much of the required equipment for the hospital. He also pointed noted that GOLI gave his Rotary Club a reason to be in Haiti, but it isn’t the only work they do. In partnership the Port-au-Prince Club, they have done water projects, solar projects and school projects in some of the neediest places in the country. Because they work with the local club, they are genuinely building local capacity.

Everyone involved agreed that one of the key goals is to increase local capacity. There is not a single pediatric cardiologist in the country and no cardiac surgeons. Training a surgeon is a ten year process and no one sees that happening any time soon. Alexandra Noisette is a local pediatrician who has agreed to train to become a pediatric cardiologist. She sat with Dr. Morelli as he did his screenings. He noted that she seems fully capable of the rigors required, but added that she’ll need to spend several years in residency in the U.S. in order to acquire the necessary skills. Ultimately, having that capacity in Haiti will be a game changer.

St. Damien’s CEO, Jacqueline Gautier, said of her work with GOLI and Rotary, “It’s a wonderful partnership.” She went on to describe the U.S. training program that Rotary funded by the Rotary Foundation through its Vocational Training Teams (VTT) program. Designed to build capacity in Haiti, the VTT will train the pediatric intensive care team at St. Damiens, providing them with six weeks at Akron Children’s Hospital. The training will include pediatricians, biomed techs, pharmacists and nurses. As a bonus, two Haitian children were flown to Akron for treatment, enabling the Haitians to participate in the care, getting valuable hands-on training that wouldn’t have been possible otherwise as the Haitian team is not licensed to practice in the U.S.

One point of hope for building capacity is Thierry Jussome, a local medical school student who volunteers to support the effort driving and providing other help as needed. He’s even had the opportunity to assist in some surgeries. Jussome himself was a GOLI patient. He had an atrial septal defect himself and GOLI fixed it 11 years ago. He’s completed three years of medical school at Quisqueya University Medical School in Port-au-Prince.

Looking forward, Robinson notes that he hopes to facilitate 150 heart surgeries in 2016, up from 36 during the first year of operations and 72 during the second. Out of the nearly 100 surgeries performed so far, they’ve lost only three patients he says. Tragic as that is, he says it is in line with the mortality rate in the U.S., he says.
Robinson also noted that the partnership with Rotary seems apropos. In High School, he had the opportunity to participate in a Rotary Exchange student program that allowed him to spend a year in Argentina, where he learned his second of four languages, including Spanish, Portuguese and Haitian Creole.
As I reflect on my day with the team, I think perhaps Dr. Morelli put his finger on heart of the matter when he said, commenting on the work of caring for the Haitian children, “God asked us to help others of all kinds. Everyone is our brothers and sisters.”
http://www.forbes.com/sites/devinthorpe/2015/11/14/bookish-nonprofit-founder-guides-team-to-save-young-heart-patients-in-haiti/

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