The Gift of Experience II: Conversations with Parents About Hemophilia

The outlook for children with hemophilia keeps getting better. Treatments are safer, easier to administer and new, longer-acting products are becoming readily available. Specialists at comprehensive hemophilia centers all around the country offer innovative treatments while advancing national standards of care. Experts at these centers give patients and their families access to the latest clinical and research developments. By emphasizing the importance of early diagnosis and intervention to prevent complications, these specialists create an enormous impact on patients’ health and long-term well-being. So it’s safe to say that there is every reason in the world for parents of children who have been diagnosed with hemophilia to be hopeful about their child’s future. Nevertheless, having a child with a chronic illness presents many challenges. There is much to learn, much to understand, a lot to teach and a new reality to adjust to. Concerns about bleeds, joint damage, inhibitors and pain are very real. We interviewed parents whose children are treated at the Boston Hemophilia Center about their experiences. In this book they share what it’s been like to raise a child with hemophilia from birth to age 6. Through their stories, we appreciate that the journey from receiving an initial diagnosis to feeling capable and in control of the situation can take more than connecting with a team at a treatment center. Home care nurses, other families who have children with hemophilia and myriad of other resources all play important roles in a newly diagnosed family’s capacity to cope. These families understand what it’s like to have a child with hemophilia like no one else can. The guidance, understanding and practical tips they offer from their own experience are gifts to others who are embarking on this journey. In this book, you’ll find excerpts of conversations with 19 parents (15 mothers and four fathers) of children with hemophilia A or B. The children have mild, moderate or severe hemophilia and come from a variety of backgrounds. Some parents knew that they might have an affected child, while it came as a complete surprise to others. Despite each family’s particular challenges, they have all faced similar heartaches and struggles, made huge achievements and seen unanticipated rewards. This book is their gift to you. I give a heartfelt thank you to the Boston Hemophilia Center for its support for this project and, of course, to Ziva, Allie and all of the parents who helped to make this book a reality.