A Voice for Haiti: Sarah Conque’s Story
Jun 02, 2016 05:02PM
By Marisa Olson
Many struggle to find meaning and purpose in life. They doubt that one person can make a difference, or create positive, lasting change. For Sarah Conque, life is simple and its purpose clear: We are here to love and serve one another. Not only can we make a difference, Conque believes we must.
In the Haitian village of Ouanaminthe, where she was a missionary with the local orphanage, the matriarchs regard her as a compassionate, maternal presence whom they trust and seek out in moments of need. Conque is a flicker of hope in a world that desperately needs her. Her heart is for Haiti, and she is in theirs.
A Condition Incompatible with Life: Nika’s Story
In the last few months, Sarah Conque’s story as the Carencro native turned Haitian missionary has gone viral. She has become deservedly admired worldwide as the American heroine who saved the life of Nika, a Haitian toddler born with severe disabilities, by bringing her for treatment to the U.S. on a medical visa.
Nika was born with the rare brain defects of hydranencephaly (a missing cerebrum), complicated by hydrocephalus (fluid on the brain), a condition, her doctors said, was “incompatible with life.” While Nika’s brain swelling was evident soon after her birth, her devastating hydranencephaly would not be diagnosed until months later, after her mother surrendered her to the orphanage, where Sarah served.
Conque first saw Nika at three months old, when her mother brought her to the orphanage for medical care. She worked closely with the young woman for almost nine months, making valiant efforts to bond the mother with her child through educational, medical and moral support. Despite Sarah’s outreach, and even after surgery was provided to reduce Nika’s brain swelling, the birth mother failed to accept her baby, and severely neglected her, nearly causing her death.
One evening, Conque paid an unexpected visit to the mother’s house, and found Nika alone inside, emaciated and barely alive. She swiftly intervened, and persuaded both the orphanage and the birth mother that Nika should be surrendered to the orphanage and placed in Conque’s full time care.
The Miracle Unfolds
When the orphanage took custody of Nika, Conque rushed her to a team of specialists in Port-Au-Prince. Nika was dying from starvation, and suffering from a recurrence of brain swelling. The doctors gave the baby a CT scan, and, for the first time, saw the magnitude of her condition. She was missing 99% of her brain, her entire cerebrum, and had only a brain stem, cerebellum, and part of her thalamus. The diagnosis was hydranencephaly.
At this news, Nika’s terminal prognosis seemed a foregone conclusion. Hydranencephalic infants have only a one percent chance of reaching their first birthday. Nika was eleven months old, barely clinging to life. Even if she survived, the doctors insisted, she could never have “quality of life.” They refused to schedule surgery to drain the excessive fluid accumulating in Nika’s skull, because, they said, she had no brain. They even refused to insert a feeding tube into the severely malnourished baby. Allowing her demise, they advised, would be a true act of compassion.
But news that would have crushed anyone else did not dishearten Conque. She located a healthcare professional in the United States who was unaffiliated with the Port-Au-Prince hospital, and agreed to fly overnight into Haiti in order to insert a feeding tube into Nika’s frail body. Thus began Nika’s slow ascent to recovery, and passage into a “beautiful quality of life.” Conque had opened the gate.
Lest Ye Not Be Judged
It is easy to judge medical experts who pronounce children like Nika not worth saving, or birth mothers who fail to bond with babies born with disabilities. We have experts to guide us, to render their honest and educated opinion. Prognoses are made every day that alter the lives of thousands, and always deemed in a patient’s best interest. Few doctors, or mothers, see beyond a prognosis.
Taking On the Odds
When the specialists in Port-Au-Prince diagnosed Nika and refused her treatment, Conque took comfort in Nika’s having any chance of surviving, even one percent. She had interned at the Shriners Hospital on the island of Oahu as a Certified Therapeutic Recreation Specialist, working with children with disabilities, and had witnessed great suffering during her missionary service in Haiti at the orphanage medical clinic. She has great respect for doctors and medical opinion, but believes God has the final word.
Sarah knew the odds against Nika, and the battle she was taking on. She could not say whether Nika would survive, but by nurturing Nika’s body and soul, she believed, Nika might begin to fight for her life. She needed a mother’s love, to sense that she was wanted. Sarah’s spirit would not bow to the odds. Nika’s prognosis need not become her epitaph.
A Beautiful Quality of Life
Nika is now more than two years old. Her existence confounds the medical community. But while doctors cannot explain Nika’s surviving past her second birthday, Conque gives the full glory to God:
She is a miracle that no one can take credit for. No doctor has “fixed” her. Her existence is so miraculous, so outrageous. She knows my voice. She smiles, she giggles. They said she has a condition incompatible with life. She is enjoying a beautiful quality of life.
Nika’s road to survival has been fraught with struggle. Her future remains uncertain. But Conque has squarely faced each challenge. Each hurdle Nika cleared was a prayer answered. Without question, Conque’s decision to intervene on Nika’s behalf thwarted the foregone conclusions of physicians. Nika is living proof that a mother’s belief can be a more accurate predictor of her child’s survival, and that love can override a terminal prognosis.
The uncertain future does not steal Conque’s joy. She has become Nika’s mother in the truest sense. Nika herself is a miracle, yet, fundamentally, no different than any other child.
An Early Love for Children and Learning
Every child is born blessed with unique gifts, and Sarah Conque’s appeared when she was only a few years old. Her mother Arlene noticed that her youngest child gravitated toward infants and toddlers. The big sister, protector role came naturally to Sarah, and children likewise were drawn to her.
Little Sarah was quiet, serious, single minded, and always reading, an activity that her parents encouraged in all their children. Unsurprisingly, she excelled in school; however, her teachers noticed behavior that seemed out of the ordinary for a small child, and shared their observations with Arlene: Sarah welcomed and made friends with the new girl in school today . . . Sarah seeks out the shy children in class . . . Sarah invites children to play who have been teased or bullied by other kids . . . . Sarah’s incipient impulse to protect and advocate for others was already evident.
Paula Verret, Close Family Friend
Long-time family friend, Paula Verret, shares similar remembrances of Sarah: From very early on, she had the kindest heart. Even at six years old, she gravitated to little children and was always helping them. She protected them on the playground and in class. Watching her grow, I always knew she would become a force for good in people’s lives. Some things you can just tell from the beginning. Her mother, Arlene, was a wonderful influence, and always promoted her daughters’ education.
Patricia Delcambre, Carencro High School English Teacher for 32 Years
During Patricia Delcambre’s longstanding career as an educator, thousands of children have sat in her classroom. Although over a decade has passed since Sarah graduated from Carencro High School, Delcambre’s memories of her and her family remain vivid:
When I learned Sarah had gone to Haiti, I was not surprised she was drawn to missionary work. Sarah was very active in student council, civic minded, connected to the community, and cognizant of the greater good. She was not raised to follow the traditional culture of adolescence. She did not date. It was Sarah’s choice. You could see she was in no hurry to get serious . . . Her parents encouraged her to be her own person. I believe that Sarah was being prepared to take a different path. And so she has. I so admire her self-sacrifice, and how she has advocated on behalf of Nika and the children of Haiti.
A Mother’s Guidance
Arlene Conque believes that instilling an early love for learning profoundly shaped Sarah’s character and career path: When my daughters were still in grammar school, I explained that when they got older, high school was a time to prepare for their future, not find a boyfriend. So when the time came, they were very comfortable with that idea. They enjoyed school and looked forward to college. By the time Sarah was pursuing her masters at the University of Mississippi, she already knew her path. I trust her judgment, and support her dream to help the children of Haiti. I admire her so much.
A Daughter’s Gratitude
Conque often expresses admiration and gratitude for her parents, whose example, belief, support and inspiration, encouraged her to pursue her dream: [They] have always beautifully modeled what it means to put others first . . . I’ve watched them serve their community and encourage others to love. I’m extremely lucky to have been taught and nurtured by parents who are unwavering in their beliefs. They raised me with a solid foundation from which to build, and have always supported my following my dreams. My gratitude is infinite for their love and support.
Arlene Visits Haiti
For most, life in Haiti is a punishing existence, beyond the imagining of those who have not experienced it. It is an especially unforgiving existence for mothers and children. Each day presents uncertainty, and death is not experienced as an abstraction that will happen “someday” as the average American perceives.
In 2014, Arlene Conque visited Haiti for the first time to see Sarah and meet Nika, just before Sarah obtained the medical visa to return to the United States for Nika’s treatment. Arlene describes the experience: Until I was there, I had no idea what “nothing” meant. In the US, we complain about lack of opportunity and resources, but there is always somewhere to turn. Not that it’s easy, not that we don’t struggle. But we have no concept of what “nothing” truly is. I am at a loss to describe what I encountered. My words fail to describe the reality I saw.
But Arlene was also inspired by the love and acceptance her daughter received from the villagers of Ouanaminthe, where Sarah served as a missionary with the local orphanage — especially from the mothers who drew hope from her presence. Sarah saw their great need, and had not abandoned them, but embraced them, providing not only valuable material resources, but compassion without judgment.
She confronted the realities of unavailable healthcare, tragic and often preventable suffering, and the appalling lack of basic sanitation and clean water. Often, her heart broke. Yet the following day, she would return to them, trusting in the path God intended for her.
Bringing Hope, Affecting Change, One Child At a Time
Profound poverty often is accompanied by the profound lack of education, a void often filled with superstition and judgment. Fear based beliefs regarding disease and disability isolate Haitian families from their communities and alienate mothers from their children. Like many other poor countries, Haiti often lacks understanding of its disability culture. A condition such as hydrocephalus for example is often seen as a mark of sin or God’s punishment.
Sarah believes that the neglect, abuse and abandonment of persons, especially children, with disabilities arise from lack of education. It is not that Haitians love their children any less—only that people fear what they do not understand. With prevention or simple treatment, many diseases and conditions can be avoided or healed, and families made emotionally whole again. Even when a cure cannot be achieved, a diagnosis may be mitigated through treatment and education.
Sarah noticed a subtle shift in the attitudes of mothers when she displayed acceptance and affection for their children who were ill or disabled. These mothers and children had known little compassion. Sarah modeled warmth and non-judgment, giving hope, and empowering independence and self sufficiency, always with family preservation and orphan prevention in mind.
A True Humanitarian
Conque is a passionate advocate for the protection of the rights and dignity of persons with disabilities in Haiti. She hopes over time to transform cultural attitudes toward illness and disability through education and enlightened support that will create a ripple effect throughout the greater society. Sarah strives to give a voice to persons unable to speak for themselves, and to minister to communities in desperate need of resources for the caring of persons with disabilities.
She plans to return to Haiti in the near future to establish a sustainable Therapeutic Recreation program whose mission will be to provide long-lasting services to impoverished families for years to come. Conque hopes to spread awareness of the possibilities of practice for other therapists like her, since numerous places throughout the world could benefit from Therapeutic Recreation.
The challenges for Sarah and others who aspire to her mission present emotional, physical, and spiritual obstacles, but she has powerfully demonstrated that change can and must be made.
To learn more about Nika’s journey and how you can help, visit www.littlewarriornika.com