Maryam Waleed Mahdi

Mother of a Son with Hemophilia

Iraqi Hemophilia Society

On September 4, 2018, our lives lit up with the arrival of our firstborn, Sam. His laughter filled our home with joy, revealing new shades of happiness each day. At just 10 months old, Sam embarked on his journey of exploration, crawling, and attempting those wobbly first steps with the support of the couches. Little did we know that a momentary stumble would alter the course of our lives.

It began innocently enough—a fall, a seemingly minor incident that unfolded into a perplexing ordeal. Sam’s tongue began to bleed, and as concerned parents, we assumed it was a typical baby mishap that would soon heal. However, the bleeding persisted, transforming mundane nights into heart-wrenching experiences. Waking up to find your son sleeping in a pool of blood is an image that still haunts me.

After a prolonged and challenging journey to attain a diagnosis, the truth was revealed: Sam had severe hemophilia A. The diagnosis cast a shadow over the once-colorful life we envisioned for him, turning it into a grayscale existence defined by a bleeding disorder and a chronic disease. The weight of this revelation was heavy, but we chose not to succumb to despair.

In the face of adversity, we developed a plan, a roadmap for Sam’s safety and well-being. Our home was transformed, with floors padded and cushioned to create a Sam-friendly environment. We became vigilant guardians of his every move, ensuring that crawling and walking posed no threat of injury or internal bleeds. Sam, adorned with a cushioned helmet during park outings, was shielded from potential head traumas.

Commitment to Sam’s health became our daily mantra. Weekly prophylactic doses of factor 8 were administered, each injection a testament to our dedication. Sam’s resilience shone through despite the challenges of finding suitable veins for the injections. His hopeful smile, a beacon of strength and determination, reassured us in our darkest moments.

As a mother, I began searching for communities interested in hemophilia to educate me and my family about how to live with it. The doctors recommended I join the Iraqi Hemophilia Society, where I met mothers who are also fighters like me. This connection with other families facing similar challenges provided invaluable support and understanding. Together, we shared experiences, exchanged knowledge, and offered each other comfort on this journey.

Gradually, things started to improve for my family, especially when a new medication became available in my country. The introduction of subcutaneous injections marked a significant turning point, making the treatment process easier for Sam and reducing the associated pain. This advancement not only enhanced the quality of Sam’s life but also brought a sense of relief and hope to our family.

Navigating life with a child with hemophilia is an ongoing learning experience, but being part of a supportive community has made all the difference. We’ve learned to celebrate small victories, cherish resilient smiles, and find strength in unity. As we embrace the advancements in medical care and share our collective wisdom, we continue to move forward with courage and optimism.

Together, we prove that even in the face of hemophilia, there is a path to a fulfilling and joyful life. Now, at the age of five, Sam not only rides a bike but lives as normal a life as possible for a child with hemophilia. I often remind him that his condition doesn’t make him less; rather, it highlights his extraordinary ability to navigate life with grace and resilience—a true superhero.

To all the mothers out there facing the challenges of hemophilia, know that you are not alone. Your strength is commendable, and I am proud to stand beside you. Together, we celebrate our children’s resilience and the hope that comes with each new day, proving that life can be lived with courage and joy even in the face of hemophilia.

Happy World Hemophilia Day!