I have always dreamt of becoming a mother, and the joy I felt when I learned about my pregnancy was indescribable. The initial months were filled with excitement and wonder, imagining the arrival of our child, whether it would be a boy or a girl, and what name we would choose.
However, the course of my pregnancy took an unexpected turn during the fourth month. A routine checkup revealed something unusual, prompting the need for a 3D ultrasound to examine the baby’s anatomy more closely. The news that followed was heartbreaking – our daughter, Heliay, had deformities in her hands, feet, eyes, mouth, nose, and jaw due to Amniotic Band Syndrome.
Devastated but determined, my spouse and I chose to continue the pregnancy despite the grim prognosis. We sought alternative medical options, but the condition worsened. Many doctors recommended terminating the pregnancy, fearing she might not survive or would live only briefly after birth. Despite the challenges, we held onto our faith and decided to proceed.
On August 21, 2015, at 39 weeks gestation, Heliay was delivered via C-section. The initial days were tough, and due to my condition, I could only see her after 24 hours. Misunderstandings arose, with rumors that I was rejecting her, but in reality, I was dealing with overwhelming pain. When I finally held her, I saw her uniqueness and beauty, despite her unconventional appearance.
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Back home, we faced numerous challenges, especially in a country with limited resources like Venezuela. Heliay needed medical assistance and necessary resources for her surgeries. Nights were spent monitoring her breathing, and after the first few months, she underwent her first surgery successfully.
Financial constraints hindered further surgeries, but Heliay’s spirit remained strong. She faced societal judgments and stares but continued to defy expectations. Her distinct personality emerged – she loved water, reacted to canine barks, enjoyed music, and communicated in her unique ways. Against all odds, she even taught a 3-year-old girl to sign.
Heliay’s therapy has shown remarkable progress, and though the road ahead is challenging, we are committed to supporting her. She deserves the same opportunities as anyone else, teaching us that life is precious but transient. In those moments of doubt, I remind myself that the future is uncertain, but Heliay has the right to shape her own destiny.