Nika is a miracle baby from Haiti, currently living in America where she is receiving life saving medical care. She was born with hydranencephaly, meaning her cerebral hemispheres were absent at birth and were replaced with cerebrospinal fluid, leaving her with 0.5% total brain tissue. This fluid build up caused hydrocephalus, which in turn caused her head circumference to continue to increase until she arrived in America in May (2015) to have neurosurgery not available to her in Haiti, to implant a shunt (a device that allows the CSF fluid to drain properly).
With only 3% chance to survive after birth and only 1% chance to survive until 12 months old, she has defied the odds in astounding ways, she is now a beautiful, almost 4yr old, with a big personality and a huge testimony.
Not only is she living everyday with a diagnosis that by definition says is “incompatible with life”, she also battled severe malnutrition caused by gross neglect. By the time she was 11 months old, she was an emaciated 6lbs (most of that tiny weight was actually the cerebrospinal fluid buildup in her head). She fought hard and by the grace of God, she began to gain weight and strength as months passed, praise God.
So, to say she is a “little warrior”, would be quite an understatement… because of God’s amazing love for us, He continues to allow us to witness miracles on earth as we see Nika thrive and do things she’s “not supposed to be able to do”… like smile, laugh, see and hear, recognize certain people around her, show emotion, live, and much more.
She and her legal guardian, a missionary to Haiti, have been in America since the end of May 2015. They work with local healthcare professionals and hospitals to meet all of Nika’s medical needs. She is currently followed by ten different specialists and has nine different therapists who work weekly to enhance her quality of life and help her reach her maximum potential.
They are passionate about sharing Nika’s life story to give God glory, to raise awareness of the great need for pediatric neurological care in Haiti, as well as show the possibilities of life for those diagnosed with hydranencephaly.