Doctors are taught to save lives—but many don’t always see the life in front of them.
As the parent of a child who suffered a hemorrhagic stroke, I’ve witnessed the miracle of expert intervention. I’ve also lived the aftermath: confusion, fragmentation, and silence. Families are often left piecing together care plans with no roadmap, no guidance, and no coordination. It’s not just emotionally exhausting—it’s physically dangerous.
The gaps between specialties can be as harmful as the disease itself.
When my son was diagnosed with a brain arteriovenous malformation b(AVM) in 2020, I assumed his medical team would lead the charge. Instead, I became the project manager—without the title, training, or support. Parents are left coordinating across neurology, neurosurgery, endocrinology, neurology, neurosurgery, endocrinology, Neurointerventional Radiology, and more:, and more. While each specialist excels individually, no one is tasked with connecting the dots.
Research confirms this reality. A 2020 Pediatric Neurology study found that “caregiver burden in families of children with neurologic disease was significantly correlated with fragmented care and lack of coordinated communication between specialists.” Families are left to spot safety risks, request missing referrals, and act as messengers between departments.
This isn’t overprotective parenting—it’s survival.
The brain is not a system of silos, yet the medical system often treats it like one. Critical details fall through the cracks. After a stroke, visual field cuts caused by papilledema can go untested. Gamma Knife radiation may swell the brain and damage the optic nerve without proactive monitoring. Steroids can trigger adrenal insufficiency or seizure risk, yet few parents are referred to endocrinology, neuro-ophthalmology or epilepsy specialists until after complications begin.
I’ll never forget the day my son received IV Reglan in the ER for nausea. He went into severe dystonia within minutes. Only later did I learn Reglan is not recommended for patients with epilepsy. No one warned us. We are not the only family in our community who has faced preventable harm from oversight like this.
This isn’t about individual negligence—it’s about systemic blind spots.
When care teams work in isolation, even brilliant specialists can miss vital information. Pediatric brain vessel disease requires a coordinated, whole-child approach—and the burden of requesting that coordination should not fall on families.
What’s missing isn’t just medical treatment—it’s safety planning.
After diagnosis, we’re told not to live in fear—but given no tools to live in confidence. If a child is at risk for seizures, why not recommend Apple Watches with fall detection, SAMi-3 monitors, Embrace2 devices, or school seizure action plans? Even simple medical alert bracelets are rarely mentioned—despite their life-saving potential.
The lack of interdisciplinary care is dangerous.
In my son’s case, I had to relay one doctor’s concerns to another, flag drug interactions, and advocate for vision protection. There were no case conferences—just disconnected appointments. Research shows that interdisciplinary care improves outcomes, reduces errors, and increases family satisfaction. A 15-minute tele-health meeting or dedicated care coordinator could prevent countless failures.
Families also need emotional support—and that’s where nonprofits step in.
After the hospital stay, recovery becomes emotional. Families need peer support, resource guidance, and help navigating identity, fear, and grief. Nonprofits like AVM Alliance offer all of this. But too often, doctors hesitate to refer families to advocacy groups, fearing endorsement or misinformation. What they miss is this: families aren’t looking to replace their doctor—they’re looking to feel less alone.
A single sentence can change a family’s life: “There’s a nonprofit that supports families like yours. They can help.”
This is not a critique of doctors—it’s a call to partnership.
I’ve seen what’s possible when a physician leans in—not just with their training, but with empathy. Parents don’t expect perfection. We just want a team. A team that sees our child as a whole person with a whole life ahead of them.
The system must evolve. We need interdisciplinary coordination by design, not by accident. We need safety education that empowers families. We need nonprofits treated as partners, not afterthoughts.
And we need doctors to understand: while you treat the body, we carry the soul of our child’s recovery.
To every physician reading this: Partner with us. Trust that families, advocates, and organizations like AVM Alliance are here not to challenge your expertise—but to amplify your impact.
Together, we can do more than save lives.
We can help those lives thrive.
About the Author:
Raylene Lewis is a mother, real estate professional, and founder of AVM Alliance, the only pediatric nonprofit dedicated to supporting children with brain vessel disease and their families. She advocates nationally for better pediatric stroke awareness, interdisciplinary care, and emotional support for families navigating complex diagnoses. Raylene’s work is driven by her lived experience parenting a child who survived a hemorrhagic stroke.