Guest Voice: My child with hemophilia can do more than people think
My son doesn't let his bleeding disorder keep him from doing what he loves
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I never thought my life would be so challenging when I gave birth to my son, Zyko, who was diagnosed with severe hemophilia A. But he gives me a reason to keep going and give him everything I can.
When I learned that my son had hemophilia, I quickly thought about what I needed to know: how to prepare for and prevent bleeds, and what the do’s and don’ts are for patients. I consulted doctors who shared tips and prevention strategies, since I had no background with the disease.
Aside from preparation, my husband and I also considered a safe environment for our son. We needed to educate people in our lives about his condition and what could happen without proper care. Some understood, and some did not. Not all can understand what we go through daily.
We’ve received various comments, many negative and some positive. But I do not let them get to us. I know with proper care and prevention, we can fully support our son in any way possible.
One of the biggest pieces of advice that we received was from an uncle who also has hemophilia. That advice is to let Zyko do everything he can. Do not treat him as fragile and vulnerable to everything. Let him discover who he is and what he can do.
Leddah Ira with her son, Zyko Raven Agustin. (Courtesy of Leddah Ira Gabales-Agustin)
A challenge we faced was when Zyko had bleeding in his foot that persisted for a week. He couldn’t get proper sleep due to extreme pain. That is why we are still researching and watching videos online to learn more. Life may sometimes test us, and there may be days we feel we cannot go on, but reality keeps us moving forward.
I started connecting with other hemophilia moms, joining groups on social media, and reading articles we can apply to our situation. As our son gets older, the fear grows. But I’m making sure I teach him what to do when a bleeding episode begins, and I am proud of that. At age 3, he knows when he needs bandaging and a cold compress. We’ve taught him to be open about how he feels and to do what makes him happy, though we offer a daily reminder to be careful.
As a career woman, I struggle when he has a bleeding episode and needs to be infused. I want to provide and care for my son, so it pains me to entrust his care to others.
With time, managing Zyko’s bleeding has become easier. It is more controllable, especially since he has a “can-do” attitude. He proves that even hemophilia is not a hindrance to doing the things you love.
Recently, my husband and I have been considering having another child. But the fear has returned with a lot of what-ifs. What if the next child also has hemophilia? Will we be able to meet their medication needs? Could this put me in danger during childbirth? There’s a lot to consider before jumping into the next chapter. I talked to my husband and asked that we reconsider our situation. Having one child with hemophilia is already a handful, and I always want to give my son the best.
I am also very thankful to my family. Without them, I don’t know if I could get through all the challenges we face during bleeding episodes. The emotional support I’ve received, especially from my husband, has helped immensely. On days when I want to break down, I know I can count on someone. And to my friends who understand our situation, no words can explain how grateful I am.
Lastly, I would like to share with every hemo mom out there that, whatever our situation, we can help our children, educate those around us, and provide early training to our kids on how to manage their hemophilia. Nothing is impossible if we teach them early and believe they can do anything.
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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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