An emaciated little girl lies on a sack on the floor, dogs pacing around her frail form. At just under one year old, she only weighs six pounds. The deformity that characterizes her condition is even more obvious on her impossibly thin body. It’s incredible she has survived this long.
Baby Nika was just three months old when she was brought into the Danita’s Children Medical Center in Ouanaminthe, Haiti. She was suffering from hydrocephalus, which causes fluid to build up on the brain.
At the center, the baby was brought to the attention of American woman Sarah Conque. A recreation therapist, she had relocated to Haiti from Louisiana the previous year to pursue her passion for helping children with disabilities.
The woman who brought Nika in claimed to be her aunt, spinning a story that Sarah suspected was to cover up the fact that she was really the girl’s mother. Despite Sarah’s concerns, there were more pressing issues to deal with.
Sarah immediately recognized that Nika was in need of immediate medical attention. To drain out the excess fluid, the girl needed surgery to implant a device known as a ventriculopleural shunt.
For two months, Sarah worked with Nika’s guardian to ensure that the little girl had access to the best possible care. She reached out to the only medical program in Haiti which could treat children with hydrocephalus and made arrangements to travel to the capital of Port-au-Prince, a ten-hour bus journey away.
Once there, Sarah worked determinedly for a week to ensure that Nika got a place on the busy surgery schedule. Finally, when the girl was five months old, she underwent her first session of neurosurgery.
While Nika was recovering in hospital, the tragic details of her life began to be revealed. As Sarah had suspected, the young woman who had brought the girl to the center was actually her biological mother.
Because of her disability, Nika seemed to be a source of shame and embarrassment to her mother. She had been wrapping the baby up in blankets whenever she needed to leave the house, hiding the child’s existence from those around her.
Shockingly, Sarah also found out that Nika’s mother had tried to sell her daughter to the Dominican Republic to be used for medical research. Unfortunately, it’s a story that is depressingly familiar to those working with disabled children in Haiti.
Many Haitians are very superstitious people, and some believe that disabilities are the result of a curse. Some even believe that they can be contagious, creating a huge stigma for children such as Nika.
Unable to cope with the demands and prejudices associated with raising a child like Nika, her mother abandoned her at the hospital in Port-au-Prince. Although Sarah eventually persuaded her to return to her daughter, it would be the start of a long and difficult battle to get the young girl the care and attention she deserved.
Back in Ouanaminthe, Sarah struggled to see Nika on a regular basis. Her mother would take long absences from the center, leaving Sarah to wonder about the little girl’s fate. When Nika was nine months old, they discovered that the surgery had not worked. Fluid was once again building up in her brain, and she was suffering from malnutrition.
Still, Nika’s mother did not bring her to the center for regular treatment. Acting on a hunch, Sarah decided to visit the family at home. When she arrived, she discovered that neighbors had no idea there was a baby living in the house.
When she entered the property, Sarah found Nika lying alone on the floor. There were dogs circling her, and rubbish everywhere. At 11 months old, more than half of Nika’s body weight was made up of the fluid on her brain.
Enough was enough. Sarah made arrangements to take the girl into her care, but the battle for her life had just begun. Doctors said that Nika was dying and that Sarah should pray for a miracle.
Further tests revealed that Nika was actually suffering from hydranencephaly, meaning that most of her brain was missing. The diagnosis was bleak – around 99 percent of babies with the condition die before their first birthday. A doctor bluntly told Sarah that hydranencephaly is “incompatible with life.”
However, despite having had the worst start in life, Nika began to thrive. She had already beaten the odds to become one of only 3 percent of babies with hydranencephaly to survive birth, even in the most appalling conditions. Now, she began to gain weight and develop like a healthy baby.
In May 2015, Nika was granted a visa to return to the United States with Sarah and receive medical treatment. The surgery was a success, and the little girl was blessed with a whole new lease of life.
Today, Nika lives with Sarah in Louisiana where the youngster continues to surprise doctors with her progress. Sarah hopes that her story will bring awareness to the fate suffered by disabled children in Haiti and other developing countries.