Becoming a parent is an exciting and bewildering time for even the most prepared. So when my husband and I learned that our first child was born with a genetic mutation that caused hemophilia, we were stunned.
Not only did know nothing about hemophilia — or bleeding disorders in general — but we already were swimming through the treacherous waters of high emotions that come with having a new baby.
That’s why we’re excited that March is bleeding disorders awareness month in Maine. It means that bleeding disorders, such as my son’s hemophilia, can become widely recognized and better understood.
Raising a child with hemophilia, for us, has meant having to assess even the most remote risk factors to our child’s safety.
As a toddler, we cut up yoga mats and sewed them into the elbows, knees, and bottom of his pants to prevent bruises when he fell. Eventually, our medical team gave our son a helmet to wear to protect his head from potential injuries.
None of this was covered in “What to Expect When You’re Expecting,” and we often felt alone trying to navigate the world with his diagnosis.
As our boy grew out of his bruise-filled toddler years and entered school, we worried kids would pick on him for being different. We fretted over whether or not the teachers and school staff would be understanding that nosebleeds for our boy can be brutal and everlasting without medical intervention.
But through conversations and building relationships within our community, we found that people were more curious and accepting than judgmental. As a result, our son is learning how to advocate for himself as he tells and retells his story of hemophilia to new friends as he advances through school grades.
What people don’t know, though — and what leaves me and my husband agonizing almost daily — is the true cost of raising a child with a bleeding disorder.
Hemophilia is expensive.
The cost of treating bleeds over a lifetime beat out the rarest cancers and HIV/AIDS. For example, when my son gets a bleed from doing something as silly and commonplace as tripping and twisting his ankle, he needs an IV factor infusion, which is given to him through a port that has been surgically implanted in his chest.
That factor costs $1 per unit. Right now, a minor dose is 1,000 units. Talk about an expensive misstep.
Over the course of a year, we might easily spend $200,000 on medicine alone. And that doesn’t count the trips to the hospital, the check-ups at his Hemophilia Treatment Center or the lost days of work and school in order to care for our son.
Because of this expense, it has been difficult to find employer health insurance that covers all we need to cover to keep our child safe and thriving, and so we have landed on MaineCare. The struggle for safe and affordable access to health care is a familiar story for those in the bleeding disorders community.
But while my husband and I definitely sweat the bigger picture of how our child will eventually pay for his hemophilia, we’re also incredibly excited about the science around bleeding disorders.
Researchers are figuring out a path to curing different forms of this once-fatal diagnosis. In one experimental gene therapy study, researchers in the UK have been able to effectively cure hemophilia. After receiving one injection of a copy of a healthy version of factor VIII, which causes hemophilia type A, patients saw normal factor levels, which has given this group of men reason to hope for a hemophilia future. This study is still in the testing phase but will soon come to the U.S., where 20,000 people live with hemophilia.
That same robust research to chase down a cure is translating to real-time changes for my son, such as advancements in how we treat our child like using longer acting medicines that allow him to do sports, play with his friends, and not miss out on being a typical kid.
Bleeding disorders awareness month in Maine is a marvelous time to learn more about what bleeding disorders are, how they affect Mainers and even how anyone can reach out and support families living with disorders like hemophilia. When communities come together to accept and support kids and parents with a tough diagnosis like hemophilia, everyone wins.
This story was originally published in Bangor Metro’s March 2019 issue. To subscribe to the magazine, click here.