In a world often compared to a patchwork quilt, some patches face the harsher winds of challenge. Nestled high amidst the clouds at 13,000 feet, El Alto—the twin city of La Paz, Bolivia—houses many such stories. Stories like Ikram’s, that remind us of the interwoven threads of courage, faith, and medical marvels. Today, we unfold the chapter of Ikram, a beacon of bravery, and the journey with Gift of Life International that brought hope to her heart—and to all those who cherish her.
Children with Down syndrome, like Ikram, face a staggering 50% risk of congenital heart disease. The most common? Atrial Ventricular Septal Defect (AV canal)—a condition altering the very structure of the heart. Unbeknownst to many, CHD (Congenital Heart Disease) in the general population affects approximately 1 in 100 children worldwide, which equates to an astounding 1.3 million children each year.
A Heart’s Journey: The Rise of Ikram
Born under the expansive Bolivian sky, Ikram—a name symbolizing ‘brave woman’ in Arabic, turned out to be a reflection of her moniker. Ikram’s mother, Jasmine, a single mother who had to quit her job in cosmetics to take care of her two her children who both have medical issues, quickly turned into a beacon of strength for her two children. Yet, like any mother, she never expected the hurdles that lay ahead.
When Ikram entered the world, a local community health center did not detect the condition in Ikram’s tiny heart. Even though Ikram received a clean bill of health, her mother knew something wasn’t quite right. Breastfeeding, turned into a battlefield. Each feeding was marred by irritations, clear cries for help.
Jasmine’s intuition, sharpened by motherhood, sensed something amiss. Online information discussing heart defects resonated with her fears, compelling her to seek a second opinion.
Come January 2023 at a screening clinic organized by Gift of Life and the local Bolivian team, Ikram’s heart revealed its secrets: three formidable foes. A VSD, an ASD, and a PDA—each name as daunting as the challenges they posed. Their combined force blunted Ikram’s growth, much-needed surgery was delayed in May due to a fierce bout of pneumonia, and finally came in September 2023.
Jasmine’s resilience was tested, time and again. The uncertainty of life in a developing nation, the fear of her little one going under the knife, and the battles against both leukemia in her older child and heart disease in Ikram. Supported by her family, Jasmine found solace in her faith and the moments of joy with her children, proving that sometimes, laughter truly can be the best medicine.
Deciphering the Riddles of the Heart
- VSD (Ventricular Septal Defect): Imagine a wall between the two lower chambers with a hole, allowing an uncontrolled mix of elements. That’s what a VSD does to the heart, letting oxygen- rich and oxygen-poor blood mix. It’s a demanding defect that can strain the heart and the lungs.
- ASD (Atrial Septal Defect): Another hole, but this one’s between the heart’s two upper chambers. Like a river that’s lost its course, this defect disrupts the flow, causing an overload of the right side of the heart and a strain on the lungs.
- PDA (Patent Ductus Arteriosus): A remnant from our time in the womb. This vessel should close after birth but sometimes rebels. When open, it diverts oxygen-rich blood back to the lungs, overloading them.
From Despair to Hope: The Beacon of ‘Gift of Life International’
Through all the trials, there was a ray of hope. The promise of lifesaving surgery from the dedicated team of doctors, nurses, and medical professionals. A synergy where the surgeon’s skill, the cardiologist’s knowledge, and the nurturing care from the nursing team converged to light the lamp of hope for little Ikram.
When asked about her journey, Jasmine reflects, “I just need to tell myself to have courage. Step by step, with faith by my side, playing and laughing with my children. That’s how we keep going.” Her strength and the tireless efforts of the medical team exemplify the heart’s resilience, both medically and metaphorically.
As we close Ikram’s chapter today and we hear Jasmine’s gratitude for the entire team after successful surgery, remember, the heart, in all its complexity, stands as a testament to life’s battles and triumphs. Each beat, each surgery, and each story like Ikram’s serve as reminders of the miracles sewn by hands of expertise, love, and unparalleled courage. If you’re inspired and wish to be part of such miraculous tales, consider giving to Gift of Life International today. Every stitch in this global quilt makes a difference.
Rob Raylman is the Chief Executive officer for Gift of Life International. He assumed this role in 2008.
Rob is a life-long resident of New York State. He graduated Hobart College in 1984 with a BS in Political Science. Over the years, he worked for US Senator Alfonse D’Amato and held the position of Vice President for Browning-Ferris Industries (at the time, the second largest international solid waste company in the world). In 2008, Rob created the position of CEO for Gift of Life International. Since then, he was visited 38 countries on 5 continents to build the Gift of Life Global Network of 84 affiliates. During Rob’s tenure with Gift of Life International, 30 affiliates have been created while over 35,000 children have received care for their heart defects.
Rob focuses on strategically building bridges between Gift of Life programs, foreign Governments, Rotary Clubs and Districts, like-minded organizations and hospital administrations in order to address the Global Crisis of congenital heart defects.