In early January 2010, the Caribbean country of Haiti made its way onto nearly every news channel around the world. A magnitude 7.0 earthquake literally shook the country, leaving thousands of people dead and another 1.6 million without homes. The devastating effect of this earthquake, the county’s most severe in over 200 years, drew the attention and sympathy of people from all over the world. Many people even made their way to Haiti to help where they could.
Three years after the earthquake, Haiti still hadn’t recovered from the terrible disaster. The incredible need of the Haitians still drew the attention of many, including 28-year-old Certified Therapeutic Recreation Specialist Sarah Conque.
During graduate school, Sarah felt drawn to Haiti, particularly the children living with disabilities who called the island nation home.
In 2013, she left her home in Louisiana and moved to Haiti, where she began working at Danita’s Children Medical Center.
About a year after she arrived in Haiti, she came into contact with Nika, a girl who would change her life.
Nika, only three months old at the time, was brought to Sarah’s facility by her mother for emergency medical care. Nika was suffering from hydrocephalus, a condition that causes cerebrospinal fluid building in the skull and swelling of the head. Sarah was particularly struck by Nika’s mother’s attitude towards her daughter; the young mother seemed more concerned with hiding her “shameful” baby from the world than getting her the medical care she urgently needed. After Nika’s mother took her away, Sarah couldn’t get the tiny child out of her mind. She began to search for Nika and eventually found her eight months later. The photo above shows the conditions Nika was living in when Sarah found her.
At that point, Sarah was able to convince Nika’s mother to let her bring Nika to the orphanage where she volunteered, when not working at the medical center.
Sadly, disabilities are still incredibly stigmatized in Haiti and Nika’s mother was only doing what she could to avoid being shunned and ridiculed by others. Like many other Haitians, she was living in a level of poverty that many people can’t even begin to understand and simply didn’t have the means or ability to care for a daughter with a condition like Nika’s.
When Sarah took Nika in, she was eleven months old and weighed just six pounds, half of which was fluid buildup. She was incredibly malnourished and her organs were beginning to shut down. The prognosis didn’t look good. An American doctor with whom Sarah had been consulting called her saying, “Sarah, she is dying, there’s nothing more that you can do for her. Pray for a miracle.”
And a miracle they got! Because of the severe neglect Nika had experienced, she was unable to drink from a bottle and could only drink a pinky-sized amount of milk every couple hours. However, Sarah kept feeding her the little she could stomach, Nika kept drinking it, and her organs slowly began to function again.
Sarah fought tirelessly for Nika to be seen by the best doctors she could find. She was even able to get Nika a CT scan and a definitive diagnosis: hydranencephaly, a condition in which the brain’s cerebral hemispheres are to varying degrees absent and replaced with cerebrospinal fluid.
Even with the best care, 99% of children with this condition pass away before the age of one; Sarah wasn’t going to give up on Nika, though. After Nika was turned away by Haitian hospitals and clinics because of her complex situation and poor prognosis, Sarah finally found an American practitioner who would fly all the way to Haiti to fit Nika with a feeding tube so that she could at least receive adequate and critical nutrition.
Nika kept defying all the odds and actually seemed to be thriving. So was the relationship between Sarah and Nika; she was even able to become Nika’s legal guardian in February 2015!
With this new legal status, Sarah was finally able to get a medical visa for Nika to come to the United States. The incredible duo flew into Florida on May 19, 2015 and had neurosurgery eight days later, where a shunt was implanted to drain extra fluid and relieve swelling and pressure.
Although the process was long and hard, the results of all Sarah’s determination and Nika’s will to live are phenomenal.
Sarah was able to set up a huge supportive network for Nika that enables her to receive incredible medical care. Best of all? All the professionals involved in helping Nika have agreed to do it entirely pro bono!
Over two years since meeting Sarah, Nika is practically a whole new baby. She’s beaten the odds and has really earned Sarah’s nickname for her, “Little Warrior Nika.”
Here she is, trying out her new stander in physical therapy less than a week ago!
Looking back, Sarah recently found something she’d written in September of 2014, a month after taking over Nika’s care full-time. “Nika, you were invisible to those around you for so long. You were mistreated, overlooked, and abandoned by your earthly family, but you were never alone … Now, you are the center of my affection, heart, and prayers. Nika, my soul is tied to your soul forever and ever. You are safe here … You are loved … And that will NEVER change, baby girl!”
Over a year and a half later, Sarah says none of that has changed.
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