Sébastien Finds Sanctuary in the Fish Room

St. Damien Hospital plays a vital role for abandoned children with special needs in Haiti. It provides treatment, love, and care, as well as a home through the Fish Room. For Sébastien, it is his only chance of survival.
December 22, 2020 - Haiti

Many of the poorest families in Haiti live in tent cities. Caregivers of children with special needs face insurmountable barriers to meet the medical needs of their children and take proper care of them.

One Friday in September 2014 should have been an ordinary day for 4-year-old Sébastien. His mother brought him to NPH Haiti’s St. Damien Pediatric Hospital for a routine checkup. Upon arrival, however, doctors quickly referred him to the rehydration center when they noted he was suffering from severe diarrhea and vomiting.

His mother had brought him to the hospital by taxi, which cost her four times the minimum wage, at the time approximately 500 Haitian gourdes (US$11). The hospital knew little about Sébastien: he was born February 2010; his mother’s name was Laurette; she sold candy not far from her house made of cardboard and cloth sheets; she lived with a man named Junior; and the family came from Simon Pelé in the Cité Soleil district of Port-au-Prince, more than an hour from St. Damien Hospital in Tabarre, depending on traffic. Simon Pelé has a population of 30,000, many of whom are unemployed and live tormented by gang warfare amid poor public infrastructure with little or no access to drinking water or electricity; residents of Simon Pelé lack the means to work and therefore eat properly. For much of the population of Haiti, this is a no-go area.

After five days in the rehydration center, Sébastien’s condition was not improving, so doctors decided to admit him to the hospital. But on this fifth day, his mother told the nurses she had to go buy some food; she never returned to Sébastien’s bedside.

According to the head of St. Damien Hospital’s Social Services Department, Herby Estime, the hospital cannot trust information provided by parents who later abandon their children. “It is nearly always incorrect or false, whether it be their name, address, or telephone number. In Sébastien’s case, the mother said she lived in Simon Pelé in Cité Soleil but with no fixed address. The estimated population of Cité Soleil is 400,000, so it is almost impossible to locate her.”

Nonetheless, though unable to find his mother, doctors continued to treat little Sébastien. They found further complications in addition to the gastroenteritis, among them neurological sequelae, congenital malformations, convulsions, microcephaly, clubfoot, malformations in the upper limbs, and delayed psychomotor development. Since entering St. Damien six years ago, Sébastien has been treated in several units across the hospital, including malnutrition, intensive care, and he is currently being treated in the infectious disease unit due to a nutritional edema. However, most days during these many years, Sébastien lives in the Fish Room, along with other abandoned children with special needs.

The Fish Room (formerly called “the abandoned room”) has 12 beds for children with a range of disabilities, most of them ages 5 to 13. The beds are usually full. Currently, another six abandoned children are being treated in other wards because the Fish Room is at capacity.

Before Herby took charge of hospital social services in 2018, a child might stay in the Fish Room anywhere from five to 10 years. But today the hospital is committed to reducing this length of stay to five months by working more closely with the Institut du Bien-Etre Social, the state agency responsible for handling such cases, to work through the legal processes that permit these children to move to a more permanent home.

Yet, this in itself is a complicated process. To date, the hospital is aware of just five other institutions in the country that are able to receive children with disabilities. A lucky few are adopted. On occasion, NPH Haiti steps in and some children are referred to the Father Wasson Angels of Light (FWAL) program.

There are many reasons why parents might abandon these children. Mothers often do so out of love and hope, determined to give their children a better and safer future with a home. They go to great efforts to choose an organization that has a solid reputation for caring for children with special needs, such as NPH Haiti.

Social stigma also plays a part; a host of cultural and religious beliefs can promote discrimination. Many parents abandon or hide their children from view for fear of reprisal from the community. These parents lack the basic skills, education, community support, and financial resources to cope with the needs of their children. Despite this, according to a USAID report, the World Health Organization (WHO) estimates that 15% of Haitians live with a disability. There is little or no census data to analyze the situation further.

This year alone, from January to November, the hospital has received six abandoned children, all with malformations and reduced mobility. The rate of abandonment varies year-to-year, depending on the political or economic challenges of the moment. For St. Damien, treating a child in the Fish Room is an expensive endeavor; supplies average US$1,863 and medication approximately US$61 each month per child. These children are supported by experienced auxiliary nurses who feed them, play with them, and take care of their personal hygiene. There is also a physiotherapist named Roselore who regularly provides mobility therapy for the children.

Dr. Marc Dervil, the pediatrician responsible for the Fish Room, confirms that Sébastien’s is a special case.

“His care is costly. He requires medications like phenobarbital, which costs approximately US$8 per bottle, and albumin, which costs US$222 per vial and is difficult to get hold of in Haiti. Despite the best efforts of the medical team, over the six years that Sébastien has been with us he has not made any progress—either clinically or physically with his deformities. He will never lead a normal life and he will always require a lot of attention. He is fed porridge, juice, and milk through a tube. He neither speaks nor moves; he simply breathes,” Dr. Dervil explains.

“However, Sébastien gives you the biggest smile when he recognizes your voice and your face during a visit. We consider him a hero; he has character. Although he is tired, he still has the strength to live. We will do everything we can to accompany him during his stay on earth,” he concludes.

*Children’s names have been changed to protect their privacy.

St. Damien Hospital is a last resort for these abandoned children. They are fragile and require intensive, professional care for all their needs. Without the help of NPH’s St. Damien Hospital, Sébastien, as well as many others, would have died without the specialized care offered here. Help support the abandoned children in the Fish Room so they, too, can live with dignity. Visit: NPH St. Damien Pediatric Hospital.

Damarie Egide Voight   
Communication Officer

You may be only one person in the world, but you may be all the world to one child.
—Fr. William Wasson




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