Guest Voice: My sons with hemophilia are blessings after a devastating loss
Amid depression and grief, I find comfort in my faith
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In January 2017, I lost my mother, who had fought cancer for several years. I fell into a deep depression, and then suddenly found out I was pregnant. The new life inside of me helped me slightly overcome the depression. I started taking better care of myself and researching what to eat so the baby would be healthy.
My husband and I immigrated to the U.S. from Bangladesh during the pregnancy, and we had no family or friends here. Without my mother to help, things were much harder, but I survived, and soon, my delivery day arrived.
I was nervous, excited, and overwhelmed. I felt like my god, Allah, was giving me my son as a substitute for my mother. Muzarib was born in January 2018, a year after my mother’s passing.
On that day, I held what seemed like a perfect, happy, and healthy baby — except I noticed a black spot on his back that I thought was a birthmark. The next day, the nurse came to check on him and took him to the nursery.
Time passed, but he did not come back. I became nervous and told my husband to check what was going on. The doctors said my baby was bleeding internally, but they didn’t know why. His blood pressure was dropping, he had become lethargic, and he wasn’t eating.
They took him to the neonatal intensive care unit and did their best to stop the bleeding. The doctors gave my baby blood, platelets, and so many medications. He also suffered a minor stroke in the midst of all this.
After 14 days of treatment, the team finally diagnosed Muzarib with severe hemophilia A, a rare bleeding disorder, which I had never heard of before. The first thing I asked the doctors was, “Will he survive or die?”
I was devastated — broken and shattered into pieces — that the blessing I received after losing my mother had an incurable disease. Moreover, I was the reason for his disease. I felt guilty about his condition and became more depressed.
Learning to live with hemophilia
Each day was challenging for me. I couldn’t sleep through the night because I was thinking about what would happen if my son had a brain bleed. Newborns sleep most of the time, but I used to wake him up frequently to make sure he wasn’t unconscious.
When Muzarib turned 6 months old, he had his first bleed in his palm, but did not need factor replacement therapy. After that, his bleeds were frequent, but when he was 2.5 years old, we started him on Hemlibra (emicizumab-KXWH). He did well on the treatment, experiencing fewer bleeds, and life became more stable. Our hematologists were always so supportive.
Boys are active, and with hemophilia, life gets more challenging as they get older. Every time we went to the playground, my heart pounded as Muzarib rode his bike or scooter. What if he fell? Every time he did, we always went to the emergency room.
I feared joint bleeds, pain, and swelling. Seeing my child go through this breaks my heart, but at the same time, I pray to Allah for betterment. I’m also thankful my son is alive and has access to treatment, which many people in other countries don’t have.
Traveling with hemophilia has always been a challenge. What would happen if Muzarib had an accident? How will other hospitals or doctors treat him if they don’t know he has hemophilia, don’t know what it is, or don’t have access to good treatment options? I once traveled with my son to Bangladesh, and carrying factor and Hemlibra with me was a hassle.
Life has gone on, my depression is more controlled, and I am grateful to Allah. I pray for a cure, and I’ve stopped blaming myself for my son’s condition. No one can control their genes! I’ve joined various Facebook groups where people with hemophilia or their mothers share their stories.
My boy is a real fighter, and he is happy that he was created specially. As Muslims, we believe that every pain erases pain and gives us rewards in the afterlife. My son has strong religious beliefs. We are happy, grateful, and surviving and thriving in this life with hemophilia.
I got pregnant again and gave birth to another hemo baby, Musaab, in 2025. Every night, my anxiety arrives when I think about the disease both my sons have, but focusing on my faith calms me. I believe that one day my sons will get better.
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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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