Sebastien finds a home in ‘The Fish Room.’
Friday 12 September 2014 was supposed to be an ordinary day for the 4-year-old Sébastien, a boy with special needs. His mother took him to NPH Haiti St. Damien Pediatric Hospital for a routine check-up. However, on arrival, doctors quickly referred him to the rehydration center when they noted he was suffering from severe diarrhea and vomiting.
His mother brought him to the hospital by taxi. It would have cost her four times the minimum daily wage. The only things the hospital knew about Sebastien was that he was born on the 1 February 2010, his mother’s name was Laurette, she sold candy not far from her house which was made of cardboard and sheets. She lived with a man named Junior and they resided in the notorious slum Cité Soleil, more than an hour from St. Damien Hospital.
After five days in our Rehydration Ward, Sebastien’s condition was not improving, so doctors decided that he needed to stay in hospital for further tests. However, on that fifth day, his mother told the nurses that she had to go and buy some food. She never returned to Sebastien’s bedside.
According to the Head of the Social Services Department at St. Damien Hospital, Herby Estime, the hospital cannot trust the information provided by parents who abandon their children. “It is nearly always incorrect. In Sebastien’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 people, so it is almost impossible to locate her.”
The doctors continued to examine Sebastien, although they began to find further complications on top of gastroenteritis, such as neurological sequelae, congenital malformations, convulsions, microcephaly, clubfoot, malformations in the upper limbs and retarded psychomotor development. Since entering St. Damien six years ago, Sebastien has been admitted into five different wards. However, since 21 February 2015, on most days Sebastien resides in the ‘Fish Room’, which is ‘home’ for abandoned children with special needs.
The Fish Room, which used to be called “the abandoned room”, has 12 beds that treat children for a range of disabilities, with the majority of the children being between 5-and 13-years-old. The beds are usually full. There are currently another six abandoned children in the hospital located in other wards because the Fish Room is fully occupied. Before Herby started his social services role in 2018, a child might stay in the Fish Room between 5-to-10 years. However the hospital is now committed to cutting this length of stay to five months so the child can find a more permanent home.
However, this in itself is a complicated process, with legal formalities having to go through the State Social Welfare department. To date, the hospital is aware of just five other institutions in the country that are able to receive children with disabilities. A few children have been adopted, others have found a more stable family environment through NPH Haiti.
There are many reasons for abandonment of 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 organisation, which has a good reputation for caring for children with special needs, such as NPH Haiti.
Social stigma also plays a part due to cultural and religious beliefs which lead to discrimination. Many parents abandon or hide the children from view of the community. They lack the basic skills, education, community support and financial resources to cope with the complex needs of the children. Despite this, according to a report byWorld Health Organization (WHO)”> USAID, estimates that 15% of Haitians live with a disability. There is little or no census data to state otherwise.
From January 2020 to date, the hospital received six abandoned children, all with malformation and reduced mobility. The admittances vary year-to-year, depending on the political or economic challenges happening in the country. For St. Damien, taking care of a child in the Fish Room poses an economic challenge, with materials costing over $2000 per month and medication is $80 per month for each child. The children are supported by experienced nurses who feed them, play with them and take care of their personal hygiene. There is also a physio therapist named Roselore, who comes to support children with therapy.
Doctor Marc Dervil, the Pediatrician responsible of the Fish Room, confirms that Sebastien is a special case.
“Sebastian’s needs are very expensive. He is placed on very expensive drugs like phenobarbital which costs approximately $10 per bottle, and albumin, which is difficult to get hold of in Haiti, costing $250 per vial. Despite the best efforts of the medical team, Sebastien has been with us for six years and hasn’t made any progress clinically or with his deformities. He will never lead a normal life and will require a lot of attention. He is fed porridge, juice and milk through a tube. He can’t speak or move; he simply breathes,” he explains.
“However, Sebastien gives you the biggest smiles when he recognises your voice and face when you visit. He is considered a hero because he has character. Although he is tired, he still has the strength to live and we will do everything to accompany him during his stay on earth,” concludes Doctor Marc Dervil.
St. Damien Hospital is the last resort for these abandoned children. They are fragile and require a lot of care, attention and rely on the nurses for all their needs. Without the help of NPH St. Damien Hospital, Sebastien, as well as many others, would have lived and died without dignity or proper care.
Please help support the abandoned children in the Fish Room so they too can live with dignity.
*Children’s names have been changed to protect privacy.