March 16, 2016 03:45 PM

A toddler and the fight of her life

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In the very best conditions Nika had a 5 percent chance of surviving her own birth. Her chance to live beyond that? So abysmal there isn’t a number to quantify it. She wasn’t born in a state of the art facility and she is missing part of her brain. She was born in Haiti. It’s likely she received little to no prenatal care and after birth was no different.

When she was 11 months old she weighed 6 pounds (and half of that was the fluid in her head) and was found on the dirt floor of a hut surrounded by trash, used condoms littering the space.

On the day I met Nika she was recovering from a surgery at Women’s and Children’s Hospital in Lafayette under the care of Carencro native and once missionary in Haiti Sarah Conque.

“I saw her and I knew I could do something and I could not walk away,” Conque says.

Nika is missing a large portion of her brain. Doctors believe her body absorbed part of her brain tissue before she was ever born. She should not be alive. In even the best conditions her existence defies statistics. She should not be able to smile, hold an object in hand or connect. And yet she does all of these things. She will be three in September. She has those beautiful rolls of a child not yet walking. She looks to Conque and her boyfriend with clear recognition. She is comforted by their voices, their presence and their touch. It's a fact undeniable once you've seen it.

"People told us she was not worth the time or resources. And she can't talk. But, already she has a lot to say," Conque says.

Tears fill the 28-year-old's eyes when she recounts the story of Nika and particularly her neglect and abuse. But, there is also joy that is reserved for mothers when Conque speaks about this little girl.

The journey to cross Conque and Nika’s paths began when Conque headed to Haiti to serve as a missionary at an orphanage. She served in the recreational therapy area working with children who are neglected, abused, abandoned in many cases. And it was in this place she met Nika at 3 months old when a woman claiming to be her aunt brought her in with concern about the large size of her head.

Conque and the orphanage worked to connect the woman with resources to care for her child and as time unfolded it became clear she was the mother.

"We are passionate about family preservation," Conque says.

It was with that passion in mind that Conque worked to give the mother the tools to care for Nika.

"I didn't want poverty or just her being afraid of how to take care of her child to cause Nika to be an orphan," Conque says.

And so Conque helped. She traveled a more than 9 hour bus ride with Nika and her mother to the one hospital that could perform a neuro surgery for the fluid in Nika's head (at the time they thought this was the only issue). The mother left 5-month-old Nika at the hospital after the surgery. The hospital called Conque, everyone called the mother pleading and begging for her to return for her child. She eventually did and Conque didn't see them for months.

"The mom came in wanting money and Nika was having seizures and getting smaller," Conque says.

Nika was put into a program through the orphanage for malnourished babies. The mother would bring her back regularly for monitoring, she would receive both education and special food to help Nika thrive. The mother, however, refused to comply and came back erratically.

"I couldn't give up on Nika," Conque says.

It all came to a boiling point when the mother arrived with Nika and the baby was the smallest she had ever been. Conque felt impressed to act. She and a pastor took a motorcycle later into the village where Nika lived with her mother.

They found her on the floor of the hut, emaciated, alone. People in the village didn't realize the mother even had a baby. Conque says it's likely because of the size of Nika's head due to the fluid.

"There's such a negative stigma," she says explaining when there is a physical problem there is a cultural belief that the mother was a prostitute or punished, perhaps there were demons inside the baby's head. Much of the belief rooted in voodoo culture pervasive in the community.

"I see this baby surrounded by trash. She weigh 6 pounds and 3 or 4 pounds of that is fluid in her head. She was neglected. This precious baby," Conque says. "I was angry but I was called to show the mother grace and I said 'I love you and I'll be back.'"

Helpless, Conque and the pastor left and spoke to the orphanage about the options to save Nika. Conque says she knew the child was in a life or death situation.

"In the United States there would be slips and forms and someone to call. But, in Haiti it was just my word," Conque says.

Conque cries when she speaks of how vulnerable Nika was in that place at that time, so close to death.

"She was all alone with no voice to defend herself or what she needed," Conque says.

They went back the next day and asked if she could take care of Nika.

The mother said yes. It was August of 2014.

"Her fight was just beginning," Conque says.

Nika could not tolerate even a pinky size portion of milk. Her organs were failing. She wasn't producing one wet diaper in a week's time. Every medical professional told Conque this was the end. Her body could not survive.

"We began to speak life over her and to cry out to God to save her," Conque says. "She had a full diaper the next morning."

Conque was laughed out of hospitals in Haiti as she sought help for the fluid in Nika's head, especially once doctor's evaluated her and saw the real issue.

"They said she doesn't have a good enough chance to survive," Conque says. "They said she essentially didn't have a brain."

Conque knew the fluid was an issue, the news that Nika was essentially missing her brain was new news.

"We knew we were looking at a living miracle," Conque says.

Doctors, however, said the child wasn't worth the resources. Conque got a medical visa and traveled first to Florida for a surgery to put a shunt in Nika's head to help the fluid drain and allow her body to absorb it.

"The doctors would say she could pass any day. Any day any day any day any day ... and she didn't," Conque says. "They took into account her body. They didn't take into account her spirit or her soul and she's fighting. The medical visa alone is a miracle."

Every piece of paper, every day alive was (and still is) a reason to rejoice.

The shunt surgery in Florida nearly a year ago radically improved Nika's life allowing her to sleep with her eyes closed and leading, no doubt, to her improvement overall and her weight gain. She has that sweet squishy shape of a healthy child her age.

They returned to Acadiana where Nika is just recovering from having a G-tube surgery (pro bono) at Women's and Children's that means she will receive food directly into her stomach. Nika has received pro bono medical services on several occasions and both people they know and don't know show up and make life possible for Nika and Conque by donations of time and money. Because she is here on medical visa Nika doesn't qualify for any sort of government funding for services and Conque spends her days and nights caring for Nika, which means she doesn't have a job or insurance to care for Nika.

"So many people have rallied around her and it's not just something nice that people are doing," Conque says. "They believe in her future and for so long we were told she didn't have one."

Nika's future remains unknown entirely. But, Conque says she's more than hopeful.

"We don't know what she's capable of and we can't wait to see. I didn't expect to go to Haiti. But, it got ahold of my heart and I couldn't pretend like I didn't see the need or that I didn't have the tools to help."

To help Nika and follow her story go to littlewarriornika.com and to see the gallery of Nika's progress from Haiti to Acadiana check out our gallery here.




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