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Today on Beyond the Bleeds, we’re again joined by Andrea Buxton and Kristy Schiffer for part two of this heartfelt exploration of family life with a child facing an inhibitor diagnosis. Together, we dive deep into the emotional and practical realities of daily infusions, coping with medical routines, and the unwavering strength required to navigate uncertainty—especially when medical needs so impact childhood and parenting. From the chaos of nightly infusions to developing nursing skills on the fly, we open up about growing as parents, partners, and caregivers, and the importance of leaning on support systems when life feels completely out of control.
Kristy Schiffer is a devoted mother and passionate advocate for her family. With her vivid storytelling and honesty, she illuminates the challenges and triumphs of raising her son William, who requires regular infusions due to an inhibitor. Andrea Buxton serves as the nurse practitioner and clinical director at the Hemophilia Outreach Center (HOC). With her depth of experience treating inherited bleeding disorders, Andrea is known for combining her clinical expertise with an ability to translate complex medical topics into practical advice for families. Her advocacy and leadership have improved protocols and advanced support for patients confronting inhibitors and the evolving treatments in hemophilia care.
“As a parent, you want to think your kid trusts you 100% no matter what … but that’s just not how their brains work.” ~Kristy Schiffer
Today on Beyond the Bleeds:
- Building a nightly routine for infusions is a significant adjustment, often requiring both parents to work together and improvise under pressure.
- Children adapt remarkably to medical routines, sometimes not remembering life any other way—but for parents, the emotional impact persists.
- Infusion procedures can be overwhelming, and practicing on dolls is very different from handling a real, squirming child.
- It’s common for parents to feel powerless or worry their child doesn’t trust them, especially during physically and emotionally challenging moments.
- Support from family, friends, and coworkers is crucial; grandparents and close contacts often help with logistics and emotional support.
- Connecting with hemophilia treatment centers (HTCs) provides essential resources, information, and a sense of community that’s invaluable for families.
- Handling the diagnosis and treatment process is not about mastering everything at once, but facing one moment at a time and letting go of the need for control.
- It’s okay, and necessary, to rely on others, accept support, and step away when things feel overwhelming.
Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder?
Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life Beyond the Bleeds.
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