It’s not uncommon for patients to be disbelieved before eventually finding a proper diagnosis and effective treatment for spontaneous intracranial hypotension due to a spinal cerebrospinal fluid (CSF) leak. When Jack became ill at age 14, his parents Jody and Burke pushed hard for his symptoms to be taken seriously. Watch Jody’s story of being a caregiver for a child with a spinal CSF leak.
On managing fear as a parent
“In that moment you’re just trying to find answers so there’s not a whole bunch of room for your own emotions. I didn’t really spend a lot of time thinking about my own fears, because we wanted to make sure that Jack felt comfort, and even though we didn’t actually know if he was going to be okay, we were telling him he was going to be okay.”
Advice to caregivers
“As a parent, my advice is exactly what everybody tells you: to be your child’s advocate. I actually could not believe how much we had to take on his care and work with the hospital we were working with, which was reluctant, actually, to continue digging. And so I would say to be your own advocate or your child’s advocate more than you ever think you need to be.”
On asking for help
“We did reach out to the social media community when we were digging and advocating for Jack. My husband put all the symptoms on one of the social media platforms and asked, you know, does anyone have any ideas, and that’s actually how we ended up getting the best ideas and advice to help advocate for Jack.”
On the impact of illness on a family
“Every now and then this will come up in our family, and hearing it through other people’s eyes is interesting—his siblings and what they remember. I think it will always be a family story that has some pain around it. But I think we have healed and are as back to normal as any family could be after this.”
The team at Spinal CSF Leak Foundation extends our appreciation and thanks to the family, physicians, and staff who assisted with this feature story, and to all those working so hard to help patients and raise awareness.
Further reading/viewing:
Resources for caregivers:
Find a Therapist
via the Anxiety and Depression Society of America
The National Alliance for Caregiving
Offering resources, information, and support for caregivers.
Rare Caregiver Respite Program from NORD
This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder.
Caregiver Support from USA.gov
Offering federal, state, and local resources for caregivers.