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Child with Hemophilia

Having a Child with Hemophilia

Having a Child with Hemophilia

By: César Bermúdez Mejía

July 24th, 2019

Advocacy and Leadership

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This post is dedicated to my parents: Gustavo Bermúdez Beltrán and María Mejía

I do not want to have a child with hemophilia! That was the first thought that my parents had, given that treatment in the 90s was poor, and that my family had a history of hemophilia-related complications. My parents were worried, and they had concerns that I would always be in pain, lack independence or face economic (or other) challenges.

Thoughts like these are common, given that ignorance often transforms doubts into fear. That said, when we’re faced with new challenges, we can obtain incalculable opportunities.

The Challenges of Living with Hemophilia

It is important to emphasize that my situation depends on the context. Due to chance, I was born and – when I was three months old – diagnosed with hemophilia.

My parents experienced a normal process of denial, and ultimately reached a point of acceptance. They said that this was a challenging time, as they were aware of the poor treatment options, health inequality and care delivery challenges that persisted in society, as well as the typical family dysfunction that emerged internally.

Eventually, with their support, love and perserverence, these difficulties were surpassed, showing that acceptance can pave the way to overcoming difficulty.

Being Happy with Hemophilia

After I was born, my parents were focused on my safety and happiness with the few resources and limited knowledge at their disposal.

"It was not easy," remembers my mother. "Obstacles existed in school, in the family environment and in the social sphere. There was a degree of overprotection, but I was never told ‘no,’ and thanks to the medical advances that were introduced in the years that passed, my son has achieved his dreams. He is an independant professional, and he is starting a family."

My father added, "I do not regret giving my son the opportunity to make my life happy.”

My parents have shown that it is normal to have concerns and fears, and I understand where they are coming from. I know the challenges that children with hemophilia face, and after experiencing them first-hand, I look back with gratitude and recognize all that they did to teach me to live with hemophilia and lead a happy and healthy life.