The Nika

 

In January 2014 a young woman came into the Danita’s Children Medical Center in Haiti where I was serving, holding a three month old baby girl with hydrocephalus (a condition where there is a buildup of cerebrospinal fluid on the brain). The young woman was referred to me because during my two years time of living at Danita’s Children, I primarily volunteered in the pediatric medical facility on the compound. I used my training as a Certified Therapeutic Recreation Specialist (CTRS) to develop programs for children with disabilities, working to enhance their overall quality of life. The woman claimed to be her aunt, and explained that her sister had died a month prior after spilling boiling water on herself and then going outside in the rain, leaving the child in her arms, named Nika, motherless. Although the story didn’t quite add up, and I had my suspicions that she really was the mother, I knew it didn’t matter at that point. Nika needed help immediately in the form of a ventriculopleural shunt, (a device implanted that drains the extra fluid into the peritoneal cavity so it can be absorbed into the body).

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.

I immediately invited the young woman to begin joining us in recreation therapy twice a week with Nika. I knew she was young and overwhelmed with this great responsibility, so I encouraged her and worked to find all the resources she needed to keep Nika in her care. With the help of Danita’s Children, I connected her to a hospital with the only program in Haiti specifically for children with hydrocephalus. I accompanied Nika and the young woman to the capital city of Port Au Prince, which is a journey of nearly ten hours by bus from Ouanaminthe, where Danita’s Children is located, in an attempt to get a coveted spot on the surgery list. The journey by bus goes through the mountains on very narrow roads making it a very treacherous trip.

Tragically, there are no full-time neurosurgeons currently practicing in Haiti.  The hospital relies on infrequent, and limited visits of skilled surgeons to meet the needs of the entire island. It’s an amazing program, but lack of resources and time force them to have to be extremely selective with which children are able to receive these surgeries, typically choosing those who seem to have the best chance for survival. We were there for a week working tirelessly to make sure that Nika was on the list, and miraculously, she received a spot and surgery was scheduled. In March 2014, at five months old, Nika had her first neurosurgery, an endoscopic third ventriculostomy and choroid plexus cauterization (ETV/CPC), which is a procedure developed by Dr. Benjamin Warf who served as a missionary in Uganda for many years.

Surgery went well, but unfortunately, even after two months of encouragement and preparation, hospital staff sadly informed me that the young woman had abandoned Nika 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, I soon learned that the young woman was indeed Nika’s mother and it seemed she always did her best to hide her as if she were a shameful secret. The times she rarely took Nika out in public, she would wrap her up with a blanket to where you couldn’t even tell she was holding a child.

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.

A little less than a month later, Nika’s mother returned to the medical center without the baby, asking for money. Sadly, the trust had been broken and it was no longer clear that she would use the money for Nika. I told her very passionately that her child needed her, and she had to put her as first priority. I decided to give her one more chance. We made a deal that day that if she was able to show me that she could take care of Nika for the summer months, I would hire a caregiver in the fall to go to her house to watch Nika, so she could return to school. I was requiring the very least of her, to feed and bathe Nika, and I would resume doing everything I could to help her with the care the baby so desperately needed.  We set a time for a meeting the following Monday to discuss the details…. And not surprisingly, the mother never showed.

I was becoming increasingly concerned for Nika’s recovery, seeing as almost two months later, her mother had failed to bring her in to see the doctor. I was also very interested to see if the surgery we had worked so hard to get was even successful. I was worried for Nika, but all I could do was pray that God would protect her and bring her comfort right where she was. It wouldn’t be until June 2014, four months later, (Nika was nine months old) that she was finally brought back into the medical center. I was relieved to see Nika alive. I was then saddened to discover that the surgery had not worked for her, the fluid was quickly coming back, and she was having reoccurring seizures. Because of the lack of care, and her declining health, Nika was rapidly developing malnutrition. Her mom was then given another chance and Nika was enrolled in The Baby Rescue Program at Danita’s Children, which is a phenomenal free program for children who are moderately to severely malnourished. Her mom began bringing her every week to the medical center to receive Medika Mamba (special peanut butter) and formula. Her status began to be monitored by doctors, and hope began to grow in my heart that with each step of progress, Nika would begin to heal, and her mother would start to see her with eyes of love, and recognize her value and worth.

Over the next two months, her mom was not consistent in bringing her in each week, which is vital to the success of the program. Nika lost even more weight, and it was quite obvious that she wasn’t malnourished because of her diagnosis, but because of gross neglect. There was no reason that this should have been the case.

On August 26th 2014, I felt the strong unction from The Lord to visit her house, and I immediately obeyed the urge, accompanied by a Haitian pastor. I had a feeling deep in my heart, which could have only come from the Holy Spirit, that we had no time to waste to act on Nika’s behalf.

We had to be her voice.

We arrived at her house and asked the neighbors where her mom was, and they replied that she was in fact not at home, but down the road. I then asked where the baby was, they responded…

What baby?”

My heart began to sink as I discovered my biggest fear was coming true… Nika was truly a victim of negligence and abuse.

I entered the house, only to discover Nika completely alone in the house lying on a rice sack and surrounded by trash, circled by dogs. She was eleven months old and weighed only six pounds. An estimated three to four pounds of that weight being fluid build up

.

The mother came running back to the house after word had spread to her that I was there. I was completely heartsick at what I was seeing, and then to be face to face with the woman that was neglecting this beautiful treasure was almost too much to bear. I felt ill knowing that after giving her mom chance after chance for nine long months, Nika was still suffering. My soul ached. I knew that I was called to show her mom grace (I still am), but what a challenge that was for me. I knew that we couldn’t take Nika away that day, but I knew that we would be back soon… very soon.

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. We agreed that the very next morning we would meet at the courthouse to draw up the new guardianship papers. I was ecstatic to remove Nika from the horrific situation she was in, but I knew that we were still in a fight.

We were fighting for her life.

The first week Nika was in my care, it hit me just how neglected and malnourished this sweet little girl was. Her internal organs were beginning to shut down, and she was unable to urinate or pass a bowel movement.

I’ll never forget the call I received from an American doctor who had been helping. My heart broke as he told me,

“Sarah, she is dying, there’s nothing more that you can do for her. Her organs are failing. The malnutrition is too severe. Pray for a miracle.”

Right after receiving that call, another missionary and I immediately began to speak life over Nika and pray to God to perform a big miracle for her. The next morning she had a full diaper, meaning her organs were working again! It was a reversal of her body giving up and her organs shutting down… it was a MIRACLE! However, the fight was not over.

Nika was still so weak and malnourished. She was hardly ever fed and if she was, it was milk that her mom transferred from her own mouth to Nika’s like how a momma bird would feed her babies (this is not in any way customary to Haitian culture). She couldn’t suck a bottle and she could only keep a pinky-sized amount of milk down every two hours. It was heartbreaking to see her struggle and fight just to eat.

We then traveled to one of the better hospitals in Port-au-Prince once more to try to get a VP shunt implanted. In preparation we got a CT scan and discovered that Nika’s primary diagnosis was actually hydranencephaly, a condition in which the brain’s cerebral hemispheres are absent to varying degrees and the remaining cranial cavity is filled with cerebrospinal fluid. The doctor explained that her 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”.

I went on to do more research and found that even with best healthcare, the odds of surviving past birth were only 3%, and somehow she had already done that while being born in unsanitary conditions, which was unbelievable.

I was then told those two ugly words…. “Any day”. Nika may pass away any day, they said.

We were then told that not only would they not be able to put Nika on the list again for a VP shunt, since she didn’t have a brain and her prognosis was so poor, but they also would not put a feeding tube in for her. She was also rejected from several of the better malnutrition clinics in Haiti, most likely because Nika’s condition was complex on top of severe malnutrition. Miraculously, a healthcare professional was willing to fly down to Haiti from America for the sole purpose of placing a feeding tube for Nika to help her get the critical life saving nutrition she needed.

As you can see, many people deemed her life invaluable and not worth the time, money, or resources, but with this unreal act of kindness, God began to show us just how much time, money, and resources she was worthy of. It seemed He had big plans for little Nika. In the coming months, she slowly but surely, by God’s grace, began to gain weight, grow hair, and you could even see her body relax in such a way that a visible peace and calm washed over her. Miracle upon miracle, she continued to survive many “any day” after “any days”.

In February 2015, after six months of being her 24/7 caretaker, I officially became Nika’s legal guardian in Haiti and committed to caring for her forever. By April 2015, at 19 months old, she was thriving and progressing, but her hydrocephalus was continuing to worsen. Her head size continued to increase. Fortunately, the door was opened to begin pursuing a medical visa for her to get a VP shunt placement in Pensacola, FL at Sacred Heart Children’s Hospital pro bono. We began working on the paper work the visa entailed, a long intensive, and expensive process – it was nothing short of a miracle that it was all completed.

Once again, God brought the right people to help and He made the way for Nika. In May 2015, she was granted a medical visa to enter The US. On May 19th, 2015 she arrived in America! On May 27th, she had her second neurosurgery and had a VP shunt implanted. This surgery drastically improved her quality of life. Not only did her head circumference decrease by almost two inches but she also lost almost two inches in height as well… AND she lost five pounds in fluid weight.

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 is continually making progress and developing with every passing day. With every breath she takes, she defies the odds and proves the impossible is truly possible with God. SO many people have rallied around us and advocated for Nika in the most amazing ways. They show that they believe in Nika’s potential, and that she is worthy of being fought for, prayed for, and cherished. Hundreds of individuals have played a part in Nika’s success story, and we thank Jesus for divinely orchestrating a village of people that truly love and care for her. She has been on many adventures in America and she brings us such joy every day.

We know that Nika has a great destiny, and has a high calling on her life to bring awareness to the fact that children with disabilities in Haiti, and many other developing countries are being denied their basic human rights. They are literally being thrown away almost solely because of their disability. We believe that God makes each and every one of us according to His plan, and we choose life, every time. We know that the textbooks have a lot to say about our bodies, but we rejoice in the knowledge that we aren’t just bodies, we all have a spirit and a soul, too. We choose to love no matter the prognosis and we believe that EVERY human life has incredible value.

We hope that you will rise up with us as we work to give a voice to those who cannot fight for themselves. We give Him ALL of the glory, honor, and praise for Nika’s life and for every miracle that has and will transpire for her. God bless!

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