The Gift of Experience II – Conversations with Parents About Hemophilia
by Laura Gray, Ziva Mann, and Allie Boutin
Reviewed by Karen Geney, Vice President of Human Resources
While it’s true that the outlook for children with hemophilia in the U.S. keeps getting better, having a child with any chronic illness presents challenges. Parents and family members must educate themselves on what is needed for a child with a bleeding disorder. While there are plenty of educational resources, the amount of information to sift through can be overwhelming for a parent if they start with an Internet search.
And, as is true with other aspects of life, there is no one answer for everyone. Help comes from all different places and people— the hemophilia clinic, friends, family members, work colleagues, religious communities, and others in the bleeding disorder community.
Laura Gray, LICSW, was a social worker at the Boston Hemophilia Center (BHC) for many years. She knew that a key support for families comes from a sense of being part of the bleeding disorder community. The need for this shared experience has started many programs throughout the world (e.g., in Georgia we have Camp Wannaklot, family camps, teen retreats, client dinners around the state, and other educational activities).
However, not everyone lives in a place with access to these resources or lives close enough to be treated at a Hemophilia Treatment Center. Thus, the idea for the book was born—to develop a resource for newly-diagnosed families who might not have other resources to learn about raising a child with hemophilia.
All of the families who are featured in this book bring their children to the BHC for their care. Two of the authors are mothers of sons with hemophilia.
There are excerpts of discussions with 19 parents – 15 mothers and 4 fathers – of children with hemophilia A or B. The families come from a variety of backgrounds. Some parents knew they might have an affected child, while it came as a complete surprise to others. (According to the Centers for Disease Control and Prevention, about one-third of babies who are diagnosed with hemophilia have no other family members with the disorder.)
Parents discuss what it has been like to raise a child with mild, moderate or severe hemophilia from newborn to age six. They openly shared their experiences while being interviewed for this book in the hope of helping other families who will also learn they have a child with hemophilia. “When we got the diagnosis, it was really easy to feel like, ‘Oh my God, life as we’ve known it is over.’ And you know, life has been different. But it’s not something to be afraid of. It’s manageable. When Brady had eye surgery, we were on a floor with all the kids from oncology. I was really overwhelmed by what the parents of the oncology kids had to go through. I prayed right then, thanking God that Brady had hemophilia and not cancer. I thanked God for the hemophilia. That’s really how I felt.”
One very positive aspect of these stories is the way the families discuss the siblings—those who do not have a bleeding disorder. One mother believes that it is important to include siblings in the child’s HTC visit and, when ready, involve them in his/her treatments. One sibling’s job may be to get the ice pack or to help with syringes or give the factor. Another family discusses how they give the children without a bleeding disorder extra attention in very intentional ways—choosing which nights they may stay up late for example.
Each family’s story is laid out with helpful and descriptive section headings. I think if I were reading this book as a parent with a newly-diagnosed child, I would skip through each chapter looking for: “Tips,” “Instincts,” and “Advice.” Actually that’s what I found myself doing as I read the book the first time and I don’t have a child with a bleeding disorder! Each story doesn’t include the same sections, but almost all have “Life Today.” The ages of the children profiled range from 6 to 13 and the stories generally cover the early years of the child’s life. “Life Today” is where the parent(s) look back and reflect on what they learned and how they and/or the child/ren are different today from the early days.
While you obviously learn a lot of valuable information from the medical professionals who treat your family and help you, it’s also invaluable to hear from another parent that: “Your world is not going to stop. Your kids are still going to be kids. Try not to feel overwhelmed. It is something you always need to be aware of, but it should not take over your life, and you should not allow it to. It is going to be part of your life, but it should not define who your children are or who you are as a family.”
“Life today with hemophilia is as normal as it gets! Just like every family, we have our share of ups and downs…moments that we are proud of and moments we can learn from.”
While some parents acknowledge they had trouble believing what some parents were telling them early on in their own child’s life, they almost all expressed a sentiment similar to this one: “James’ hemophilia is just a part of our lives. In the spectrum of things that can go wrong, we’re lucky to have the support system that we do and are blessed with two great kids; one of whom just happens to have a bleeding disorder.”
“Sometimes at night, when Lucas goes to bed, I’ll just sit with him and thank God for blessing me with a child that—regardless of his hemophilia—has 10 toes, 10 fingers, two ears, two feet and hands, a whole body. He’s very smart. He’s caring. He’s attentive. He’s everything that any parent would ever want in her own child. I thank God for just giving me the opportunity to be a mom, and for giving me the strength to cope with hemophilia. And for giving me the knowledge to understand hemophilia and know that it’s not my fault. That it’s not a defect.”
While this book is directed to newly-diagnosed families, it will be helpful to anyone working with families affected by hemophilia. The families interviewed are very open about what some of their fears are as well as things that helped them get through hard times. This can be beneficial for clinicians who are working with families like these. The book is well written, compelling, and an enjoyable read.