Babies with the brain disorder hydranencephaly often die before their first birthday, but 2-year-old Nika is defying the odds.
Hydranencephaly wasn’t the only thing that almost claimed the little girl’s life. Born to a young mother in Haiti, Nika was neglected and malnourished; but after a young missionary reached out to Nika and her mother, the little girl began experiencing one miracle after another, according to LiveAction News.
Sarah Conque was serving as a medical missionary at the Danita’s Children Medical Center in Haiti when she met Nika for the first time. According to Conque’s blog, a woman who said she was Nika’s aunt (later believed to be her mother) brought the baby girl to the hospital for care in January 2014. Nika was 3 months old, and the medical staff there treated her for hydrocephalus, a condition where fluid builds up in the brain.
Conque said she and the hospital staff worked with Nika’s mother to develop a continued treatment plan for the little girl. She wrote:
One of the main goals of the Recreation Therapy program I helped pioneer at Danita’s Children, was to empower families with children with disabilities (like Nika and her mom) with the education, resources, and tools needed for them to independently care for their children. With orphan prevention and family preservation in mind, the hope was that through early intervention and forming real relationships, that we’d be taking a step towards preventing the neglect, abuse, and abandonment that is so common for this population in Haiti.
Conque said she took Nika and her mother on a treacherous 10-hour bus trip to Port Au Prince where Nika had surgery to drain the fluid from her brain. The surgery went well, but hospital staff later informed Conque that Nika had been abandoned at the hospital.
Many phone calls were made to plead with the young woman to go back and retrieve Nika. Thankfully, after a couple of days she finally returned …
In Haiti, there is a large stigma placed on those with disabilities. It’s possible that Nika’s biological mother was not willing to take the ridicule. Many believe that if you have a disability, you must be cursed or that you can be healed with voodoo rituals, or even a worse belief – that you can catch “it” too if you touch the individual. I also learned that the mother had been a prostitute, and it was possible that she had tried to terminate the pregnancy by drinking different types of poisons. Furthermore, the mother told me that she had tried to sell Nika to the Dominican Republic for “research”, but they wouldn’t take her. Sadly, as horrific as this absolutely is, this is not an uncommon story for many children with disabilities in Haiti.
CLICK LIKE IF YOU’RE PRO-LIFE!
After many failed attempts to help Nika’s mother care for her baby, Conque finally stepped in. One day when she went to visit the family, she found 11-month Nika completely alone in the house, surrounded by trash and dogs. Nika was severely neglected and malnourished almost to the point of death, according to the blog.
The very next day I asked the President/CEO of Danita’s Children, Danita Estrella Watts, if we could take Nika in. I explained that I had done all I could to support and encourage Nika’s mom to love and take care of her, but in the end she just didn’t comply with any of the arrangements made, and that it was time to remove Nika from this terrible situation. The mother was well dressed with new clothes, wore nice jewelry, and had a smart phone… but it was clear that she placed those things at a higher priority than taking care of precious Nika. This was the harsh reality. The answer was an immediate ‘yes’, and I raced back to Nika’s house with the Haitian pastor. We asked her mom if she would be okay with us taking care of Nika and bringing her into the orphanage family, she was more than happy to say yes.
Conque became Nika’s legal guardian, but Nika still had struggles ahead. First, doctors predicted that Nika would die from malnourishment. She was 11 months old and weighed only 6 pounds. Conque and another missionary refused to give up hope and prayed for the little girl’s recovery. Miraculously, she did.
Then, doctors diagnosed Nika with hydranencephaly in addition to hydrocephalus. Doctors said Nika’s “brain stem and cerebellum are intact, and parts of her thalamus, but nothing else, the rest was just fluid. He told me that 99% of babies with this diagnosis die before they turn one and that this condition is ‘incompatible with life.’” Haitian medical centers refused to put the little girl on their lists for surgery and treatments because of her diagnosis, according to the blog.
But another miracle happened, followed by another. One doctor flew to Haiti and gave Nika the immediate treatment she needed. Then, the U.S. gave her a medical visa in May 2015 so that she could travel to Florida for a second neurosurgery.
After recovery, we began to see numerous improvements that have radically changed Nika’s every day reality. After her surgery, her pediatrician in Florida graciously allowed us to live with her and her family for about a month. Talk about amazing care, right? After that, we returned to my hometown in South Louisiana where we currently reside and network for Nika to receive all of the medical care she needs pro bono.
Nika now is 2 years old. According to the Facebook page dedicated to her story, Nika now is able to stand up with assistance and hold up her head. Conque said that Nika’s miraculous life “proves the impossible is truly possible with God.”
Conque’s blog Little Warrior Nika has Nika’s full story and information about how to support her medical needs.