Jonenskia Hector's best chance at life is a passport.
Diagnosed with a large hole in her heart, the 8-year-old girl has been waiting for months to have a life-saving surgery that isn't available in Haiti to repair the defect. Last year, after applying for a passport and being told there was a problem with her documents, she lost her surgical slot in the Cayman Islands to another sick kid.
Three months ago, after the issue with her documents was resolved, a new passport application was submitted. She's been waiting ever since.
For some of Haiti's critically ill children — like Jonenskia — a passport can mean the difference between life and death. Thirty-two children have died in the past five years while waiting for passports or documents from Haitian government archives that would let them travel to get life-saving heart surgery, according to the Haiti Cardiac Alliance, a medical charity that runs a free pediatric cardiac clinic out of St. Damien Pediatric Hospital and flies children to other countries for care.
"It's unbelievably frustrating as a doctor," said cardiologist Jim Wilentz from Port-au-Prince, where he and partner Owen Robinson co-founded the alliance five years ago. He estimates that their team of doctors has saved about 370 Haitian children and young adults through curative heart surgery. "You have a medical team trying to save a life and then you run into a bureaucratic snag that turns into a life's end."
Robinson, the executive director of the charity, called the situation "really sad. The idea that you have a surgical spot... and the only thing holding that child back is a passport, and the child dies."
Haiti's passport problems, which Haiti's president promised to address last year, are all too familiar to many in the country who have tried to get one. The process requires documents from four different Haitian government agencies. The Directorate of Immigration and Emigration, which issues Haiti's passports, often is plagued by a shortage of booklets, sometimes because the Haitian government has fallen behind on a payment to the German company that produces them. The same company also provides the printers in Port-au-Prince and Washington, D.C, which are the only two places passports are processed.
The government could not provide the number of delayed passports, though the Director of Immigration Joseph Cianciulli conceded Thursday that there is a shortage of booklets due to a late delivery of them.
But, he said, "I haven't stopped printing passports."
Passport applicants have to go through a series of time-consuming bureaucratic steps. Obtaining proof of birth registration from the national registry in Haiti requires working with a network of private agencies that can add weeks or months to the process. They also have to make a trip to the country's tax office to pay for a required stamp. And all of it has to be done before an application can even be submitted.
“There are crazy delays every step in the process," said Robinson, who estimates the charity has 200 children and young adults in the pipeline in need of passports so they can seek treatment outside the country for heart conditions.. "Every once in a great while it pops up in two months. But often, four, five months later, you're still asking 'Where is it?'"
Robinson and Wilentz, who said they have repeatedly pleaded with Haitian government ministers to speed up the process for many children, thought hope had finally arrived last year when they heard that newly elected Haitian President Jovenel Moïse had promised that passports would be delivered in five days.
Moïse announced that payment had been made to the German firm in charge of providing the booklets and several new processing centers would open in municipalities around the country to speed up delivery. Passports, the president promised, would no longer be so hard to get.
Even Haitians who were living in the Dominican Republic and in danger of being deported would find help, Moïse said, promising the quick delivery of 30,000 passports to help migrants legalize their status in the neighboring country.
A year later, thousands of Haitians in the Dominican Republic are still awaiting passports ahead of a Aug. 25 Dominican government deadline. Frustrated by the wait, hundreds of Haitian migrants in the Dominican town of Barahona marched to the local Haitian consulate earlier this week, denouncing corruption and indifference in the office over a backlog for passports.
Kessy Acceme, the social worker with Haiti Cardiac Alliance, said after the president's announcement last year there were some improvements.
"For two weeks, a lot of people received passports," he said. "We had 40 children who needed to get surgery, and we received their passports quickly. Now I have the impression that they just can't keep up with the demand."
Cianciulli, the immigration director, said that — as someone who has had heart bypass surgery himself — he's sensitive to anyone with a heart condition.
He said he has sometimes provided passports "in three hours for emergency departure" and finds "it astonishing that there is a humanitarian case where a passport wasn't delivered in 24 hours."
Another immigration official, Osselin Lambert, went even further and said "no child has ever died" because a passport wasn't delivered in a timely manner for a humanitarian departure.
The staff at the cardiac alliance say the problem isn't just one of passports stuck in immigration processing. It's one of overall Haitian bureaucracy. Getting an appointment to submit applications directly with the immigration service is nearly impossible, they said. Going through private agencies adds cost and is also slow. Even when they cite humanitarian reasons, the staff said, documents still take months.
"We are not looking for special treatment," said Robinson. "But there should be a formal written process for how you get a passport quickly."
Last year, doctors lost a 14-year-old patient, Stevenson Theramene. By the time his passport arrived and he was flown to the Cayman Islands for heart surgery, the teen had already had a mini stroke and stopped speaking. When he arrived at the hospital, Health City Cayman Islands, he was in kidney failure and died a month later without being able to have the surgery.
"If we had gotten him over there even two months before, he would have gotten the surgery," Robinson said, recalling that someone from the hospital's charitable foundation had to ride in the ambulance from the airport to the hospital with cardiac shock paddles in case Stevenson's condition worsened on the drive. "Up until the stroke, he was a very good candidate for surgery."
Wilentz said Stevenson's case isn't an isolated one. It has "definitely happened a number of times, children who have surgical spots and can’t get out of the country and they died."
Jonel Hector, the father of 8-year-old Jonenskia, said he wonders every day when his daughter's passport, and that of her mother, will finally arrive. Doctors, he said, had hoped medication would close the hole in Jonenskia's heart. It's still there and the little girl, who is so stressed about her condition, can't focus in school.
"We have to be very careful with her," said Hector, 38, who lives in Carrefour on the outskirts of Port-au-Prince. "We don't let her run or get too excited."
When she sleeps, he said, her mother frequently wakes up in the middle of the night to check on her "to see if she's still breathing."
Leogane resident Marieta Tanis, who has been waiting six months for a passport for herself and her son Lucito Pierre, also lives in fear. Lucito, 6, has been diagnosed with a type of congenital heart disease. He suffers from night sweats, chest pains and occasional coughing episodes with vomiting. Fevers are also frequent.
"He's always touching his chest," said Tanis, 44, who tries her best to explain to Lucito that "he's sick in the heart."
Like Jonenskia, Lucito had a spot waiting for him in the Cayman Islands that he could not use.
"If he’d had a passport within a reasonable time frame after diagnosis he would have been fixed by now," Robinson said. "He is at risk of dying at any point."