Holding space for grief and love in the hemophilia community

As a hospice chaplain, I meet people during the hardest moments of their lives. Whether at a deathbed or in a funeral home preparing for a service, these are times of finality. Grief brings people together as they share their loss and honor the person who has died.

A recent prayer service made me stop and reflect.

My husband and I were asked to officiate a service for a baby girl who died under tragic circumstances. It has been heartbreaking for the family and the community. As a clergywoman, I am called to be present for the grieving, but this baby’s death scared me. Would I be able to provide comfort? Would I be able to keep my emotions together?

When I approached the casket and saw her beautiful face and dark hair, my heart ached. She was wrapped in a pink and white blanket and wore a pink headband. Even though I did not know the family, I felt deep grief.

As a woman, I wonder how mothers who have lost a child keep going. It must feel like part of their soul is missing, leaving an empty space in their heart. Tonight, I thought about my own mom.

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The hidden grief I experience as a mother of sons with hemophilia

How do mothers cope?

My mother lost a baby boy in 1962. It seems my brother died from a brain bleed, a complication of hemophilia. She never talked about him. How did she handle the pain? How did she manage to laugh so fully, with tears streaming down her face? I wish I could ask her, but I am grateful she kept living and did not give up after his death.

I often think about my brother. If he had survived, he would have turned 18 in 1980. He might have been one of the many lost in the hemophilia holocaust. In the 1980s, during the AIDS epidemic, more than 4,000 children, siblings, relatives, friends, and parents with hemophilia died from HIV/AIDS due to tainted blood products.

In 2026, is it still important to talk about the hemophilia holocaust? Many younger families and those newly diagnosed may not know about Ricky Ray and Ryan White, both young men with hemophilia who died from complications of HIV/AIDS. Through their tragedies, these men changed the bleeding disorders community. They brought attention to how the bad blood epidemic hurt us all. Their hard work and advocacy made a difference for people with hemophilia.

Thankfully, the blood supply is now safer, and the way factor replacement products are made has improved. It can be easy for our community to forget what happened in the past. I do not share this to frighten families with babies who have been diagnosed with hemophilia. Instead, I hope to encourage younger people to learn about hemophilia’s history and to thank those who have worked, and still work, to keep the blood supply safe.

I remember learning about the tainted blood supply when my first son was born in 1996 and diagnosed with hemophilia A. The infected factor had been removed from the market only 11 years earlier. It was still fresh.

So many children and adults lost their lives. I have friends in the community who still mourn their loved ones from that time. The grief is ongoing. The loss is huge.

How did their mothers cope?

Maybe they coped the same way my mother did. They got up the next morning. They made coffee. They folded laundry. They laughed at funny things. They cried when things were sad. Day after day, they chose to keep going in a world that felt broken.

Grief does not end life. It becomes part of it.

Love never dies

When I left the prayer service for that baby girl, I was heartbroken. I could not fix what had happened or make sense of it. But I could be present in the space of heartbreak and hope. I remembered my mother, who grieved in silence. I remembered the thousands of people in my community who died from tainted factor. I could be grateful for safer treatments today. I could say the names of those who lost their lives.

In hospice rooms, funeral homes, and quiet sanctuaries, I see the same truth over and over: Love does not end when the body dies. Love changes. The physical body, the hugs, and the laughter are not present, but the memories keep love alive in our hearts and souls.

Maybe this is how we cope. We carry these blessed souls with us in all we do.

And we tell their stories to keep their memories alive.

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.