Happy summer to all! I’m honored to join the ranks of the Infusing Love bloggers, and appreciate the opportunity to share my family’s stories and perspectives on living with hemophilia. Our family includes myself, my husband Nick, and our son, Liam, who is 4 ½. We live in Vermont right on the border with New Hampshire. We moved here 8 years ago from New York City, and while the change of pace was certainly a struggle at first we enjoy living in this beautiful place!
My journey with hemophilia began when I was nearly 9 years old and my brother was born. At three months old, he was diagnosed with severe hemophilia A, which was a surprise to everyone in our family. This was 1988; all we knew about hemophilia was information in the public domain about tainted blood products and discrimination. Needless to say, it was jarring and changed the way my family functioned in many ways. Kudos to my mom, who in an era when there was not a vast array of information readily available, did tons of her own research to figure out what needed to be done to keep my brother reasonably safe. I remember trial and error solutions and conversations that asked, “we need to replace all glass dishes in the house with plastic in case one breaks? (No.) Will we pad sharp corners on walls and furniture while he learns to walk? (Sure, why not.)”
The era of hemophilia we came in to was an interesting time since there were new donor testing and viral inactivation treatments of blood products, and the beginning of innovation for factor VIII products in general. I paid attention to these developments though they did not have a direct effect on my teenaged life. I am grateful that I was included in these discussions so that I have a foundation on which to build my own understanding of this disorder and the community.
Test results about my own carrier status were inconclusive when our family was tested in the late 1980s, and I was advised to wait on follow up testing until I was ready to start my own family. I was wary of flagging myself as a carrier, wondering would that be a pre-existing condition and prevent me and a future child from accessing affordable health insurance? The battles that my family waged with their own insurance companies over the years had stuck with me. It vexed me as a child, and of course continues now; how can you punish someone who has no control over the health issues they have? The profit-driven nature of health care, drug companies, and insurance providers is only more amplified in our current political climate.
In any case, once the Affordable Care Act was passed I felt safe enough to have my carrier status tested and it was confirmed that I was. On the bright side, I was able to connect with our local HTC through that process and get to know them a little before Liam was born in 2013. We did not do prenatal testing to determine his status, but approached delivery with the assumption that he did have hemophilia. He arrived swiftly and without any issues, and we weren’t surprised to hear his status of severe hemophilia 2 hours after he was born. We did have one infusion before leaving the hospital, thanks to a pesky heel stick that wouldn’t stop bleeding. As my needle-averse husband and I waited to go to the NICU for his factor to be administered, and as exhausted new parents who were approaching a whole new world, we were a wreck. My brother, now a wizened mid-20s New Yorker, watched us with some bemusement as we panicked about “the first infusion” and our speculation about the rest of our life. When we returned from the NICU after a quick and easy shot, he said, “You realize that this is not a big deal, right?”
Well. Talk about a change in perspective.
Yes, of course it is a “big deal,” but when you think about how far we’ve come as a community and how things have changed, it sure is different. Prophylaxis has alleviated the painful joint bleeds that afflicted my brother through elementary school. Home access and safer products have made hemophilia a manageable disorder rather than a death sentence. We are privileged to have access to the resources that make this manageable, and have a responsibility to share those resources with those who cannot.
As a mom to a feisty and opinionated toddler, I am constantly evaluating our choices in the same way my parents did after that initial diagnosis. We didn’t pad the walls, but we did pad the kid and I have no regrets about that choice. We don’t restrict him from most activities, but he knows that some things (like jumping on the trampoline at his friend’s house) are only “shot day” activities. Our approach to infusions has been to keep it calm and routine, and that has been highly successful with no tears, screaming, or fighting. We just get it done and have a small treat afterwards. Ironically, the suggestion of brushing his teeth elicits a far worse response these days!
There are scary days, like the time he ran in the house with wet feet, and no helmet on, and though no one saw it to confirm, what I imagined to be a cartoon-like sail through the air, before landing on the back of his head. And yeah, maybe I slept on his floor that night. But you know what? We infused him for a few days in a row and he was fine. It’s not always this good of an outcome, but sometimes it can be. That’s what I hope other new moms can hear through the fear and noise of entering this world.
Through my time as a blogger I hope to share my thoughts on advocacy and education, as well as activism. I believe our community has a unique and strong voice that has created change before, and if the current national debate on health care is any indicator, we will need to use our united voice to protect our families and not go backwards into a scary time again.
Kristi, her husband, Nick, and 4-year-old son, Liam, live in Vermont.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.