Doctors are taught to save lives—but I am not convinced that the majority (or all) are always taught to truly see the life that is before them. As a parent of a child who suffered a hemorrhagic stroke, I’ve witnessed the miracle of expert intervention. I’ve also lived the reality of what comes next: confusion, fragmentation, and silence. Too often, families are left piecing together a treatment plan with no roadmap, no guidance, and no coordination. As parents, we feel as if we are literally dealing with ‘Trial by Fire” because we are well aware that “we don’t know what we don’t know.” And, that’s not just emotionally hard—it’s physically dangerous to the health and well being of our child.
There are gaps. The ones that fall between departments, appointments, and the things specialists simply assume someone else will mention. When dealing with pediatric stroke and brain vessel disease, what’s left unsaid can hurt as much as the stroke itself.
When my son was diagnosed with a brain arteriovenous malformation (bAVM) in 2020, I assumed his medical team would lead the charge. What I didn’t expect was how quickly I would become that team’s project manager—without the title, training, or support.
In pediatric stroke care, parents are often left coordinating follow-up care across a dizzying list of specialties: neurology, neurosurgery, endocrinology, Neurointerventional Radiology, and more. While most doctors excel at their individual specialties, the system fails when no one steps up to connect the dots. The family is left to schedule, research, advocate, and manage risks—often while still grieving and trying to process the diagnosis of their child themselves.
This isn’t a case of overprotective parenting. It’s a reality backed by research. A 2020 study in Pediatric Neurology found that “caregiver burden in families of children with neurologic disease was significantly correlated with fragmented care and lack of coordinated communication between specialists.”¹ Families shoulder the responsibility for identifying missed referrals, requesting accommodations, and even discovering safety risks their care team never mentioned.
The mental load is immense, and the stakes are high. Parents are expected to understand complex medical terms, navigate insurance approvals, identify gaps in care, and act as both advocate and administrator—often while trying to maintain jobs, the child’s siblings, or other children, and their own emotional wellbeing.
The human brain is not a system of silos, but sometimes the medical system treats it like one.
One of the most dangerous trends I’ve witnessed in pediatric brain vessel disease care is the failure of specialists to look beyond their specific area. For example, when a hemorrhagic stroke occurs, the neuro team rushes in—but when the emergency has passed, and the child is recovering, few check to see how well the child continues to see after the bleed. Visual field cuts, often caused by Papilledema, are frequently overlooked despite their profound impact on daily life. A child who can no longer see with all 4 quadrants of their vision may struggle to read, walk safely, or succeed in school—and yet, many families are never even told to get a visual field exam.
The same issue emerges in the aftermath of Gamma Knife radiation. Where is the pro-active monitoring to protect the optic nerve and thus the child’s visual field? When brain swelling occurs, it’s not unusual for the symptoms to be treated reactively—with steroids—but a proactive conversation about keeping pressure off the optic nerve to protect field vision and the long-term effects and monitoring that should accompany steroid use is all too often completely missing. When the optic nerve is damaged from swelling, what’s done is done. A child’s vision is gone. Yet, in many cases, if medication is given in time, even with significant swelling, pressure can be taken off the optic nerve and the visual field can be saved. Shouldn’t a child’s vision be important enough that all doctors have an obligation to try to protect it?
Additionally, no one explains to parents that steroids, even for as short a time as seven days may lead to the start of adrenal insufficiency, or that an endocrinologist should be involved as soon as steroids are. And, while medications may help reduce swelling, they can also increase seizure risk. Yet, instead of preemptively referring patients to an epilepsy specialist, to access the risk of seizure, many families are left to figure out that next critical step only after a seizure occurs.
Even at the most basic level of care, critical information is often left out when a child is first diagnosed with brain vessel disease. Many families are never told that AVMs can continue to grow and cause harm long before a rupture. These malformations may damage healthy brain tissue simply by pressing against it, by infiltrating it, or through the “steal effect”—a phenomenon where the AVM diverts blood away from surrounding tissue, depriving it of oxygen and nutrients.
Parents are also rarely warned about medications that should be avoided. For example, NSAIDs are commonly used for pain, yet they can pose serious risks for children with brain vessel disease and should be used with caution—if at all.
I’ll never forget the day my son was given IV Reglan in the ER to treat nausea while he was dealing with a horrible headache. Within minutes, he began showing signs of severe dystonia, contorting his body, writhing in his bed— practically ripping his clothes apart and trembling like someone with advanced Parkinson’s Disease. I had to sprint down the hallway to find help. Later, when I looked up the drug, I learned that Reglan carries a known risk of neurological side effects—and is clearly listed as “not recommended” for patients with epilepsy. But no one told us that. We weren’t warned by any of his neuro doctors, and he paid the price for the gap in care. Sadly, he is not the only one in our pediatric community who has suffered from this kind of preventable oversight.
This isn’t about individual negligence—it’s about systemic blind spots.
When care teams operate independently, even the best specialists can unintentionally miss crucial information. They assume someone else will take care of it. But in pediatric stroke and bAVM care, there is no room for assumption. A child’s health depends on a coordinated, holistic approach. And the burden of requesting that coordination shouldn’t fall to the family—it should be built into the standard of care.
Parents are constantly told not to live in fear—but we are given no tools to live in confidence. That contradiction is one of the most difficult parts of navigating brain vessel disease in children.
After diagnosis, the medical team often outlines a treatment plan—but rarely a safety plan. And yet, every parent who has heard the words “risk of seizure” or “risk of bleed” knows the weight that comes with it. That weight does not go away at discharge. It follows us home. It follows our child to school. It follows us when we check on them in the middle of the night to see if they’re still breathing.
What’s missing isn’t just medical information—it’s guidance for how to keep our children safe when they’re not in a hospital bed. That kind of support can—and should—come from the medical team.
If a child is known to be at risk for seizures, why not proactively suggest tools like:
• An Apple Watch with a seizure detection app or fall detection feature
• The SAMi-3 alert system for nighttime monitoring
• The Embrace2 watch, which has been FDA-cleared for seizure detection²
• Heart rate monitors or smart devices synced with parent phones
Even for children with only a history of focal seizures, the truth is a seizure can quickly escalate. It only takes one seizure in the wrong place at the wrong time to change a life forever. These devices are not perfect—but they give families a layer of protection and a sense of empowerment.
Likewise, even simple tools like a medical alert bracelet are rarely mentioned by providers—even though they can speak for a child when the child cannot.
And then there’s the school environment. Rarely are families provided with a seizure action plan, Hemorrhagic Stroke (bleed) action plan, fall precautions, or any guidance on accommodations—unless they know to ask. That burden again falls on parents who are still learning the language of this diagnosis.
I understand that doctors are trained to treat illness—not to frighten families. But offering safety guidance isn’t fear mongering. It’s respect. It says: “We believe your child deserves a full life—and here are ways to help protect it.”
When parents are given no safety strategies, we are left to Google our way through a minefield. That’s not medicine. That’s survival mode.
Too often, what families experience is a collection of brilliant minds—each doing their part—but rarely communicating with one another. It becomes our job, as parents, to be the relay runner between departments. We take notes in one appointment and deliver them to the next. We ask questions the neurosurgeon forgot to address to the neurologist two weeks later. We become the message board for our child’s brain.
This lack of interdisciplinary coordination isn’t just inefficient—it’s dangerous.
In Kyler’s case, I often found myself explaining one doctor’s concerns to another. I was the one raising red flags about medication conflicts, about whether swelling management was affecting other parts of his growth or made him more susceptible to common viruses, about whether certain treatments had seizure risks, and about how to protect the visual field which can disappear so slowly the child doesn’t even know when it is gone. I don’t have a medical degree, but I had no choice. There was no team meeting. No case conference. Just scattered visits, none of which connected the full picture.
Research consistently supports that interdisciplinary care improves outcomes for children with complex neurologic conditions. One 2017 review published in The Journal of Pediatric Rehabilitation Medicine found that care models incorporating interdisciplinary teams led to “significantly improved patient and family satisfaction, as well as decreased medical errors and redundant services.”¹ In fact, interdisciplinary bedside rounds—where all specialists and the family meet together—have been shown to outperform siloed approaches¹°. But, in many pediatric settings, collaboration is still treated as optional rather than essential.
We live in a world of technology used to make connection between one another easier. This needs to be applied to medical care and is not a difficult “fix.” A actively used, shared, communication platform is vital to the care of the child. Many doctors’ offices now use an “Epic System” or something similar, which allows for the parent to reach out to a healthcare provider by name. However, no clear coordination between fields of practice is offered or available. A designated coordinator could make a huge difference, as could a 15-minute team meeting over Telehealth when a case clearly involves multiple departments. As parents, we are told we have “medically complex children.” So where is the interaction between speciality fields? What is needed isn’t radical change—it’s respectful change. One that acknowledges that behind the diagnosis is not a condition, but a child. A child who deserves more than fragmented care. And a parent who deserves more than to be the only one holding it all together.
There’s a part of recovery most doctors don’t see. It happens after the hospital, after the scans, after the follow-up appointment. It happens in homes, classrooms, and quiet car rides—when a child asks if they’ll ever be normal again, and a parent doesn’t know what to say.
This is where nonprofits like AVM Alliance step in. It is also where many physicians make the mistake of stepping back.
In my experience, too many doctors are hesitant—or outright resistant—to referring families to nonprofit advocacy groups. I’ve been told, directly, that some providers fear they would be “accidentally endorsing one organization over another.” Others worry about families receiving misinformation or developing unrealistic expectations. But here’s the truth: families aren’t looking for a replacement for their doctor. They’re looking for reinforcement.
They’re looking for someone who can tell them they’re not alone. Someone who can guide them to resources like:
• Beads of Courage to help their child visualize their strength
• A Kid Again, Make-A-Wish, and other outlets that offer joy during dark moments
• Peer support groups and private forums where parents can cry, vent, and hope without judgment
These are not luxuries. They are lifelines. And the refusal to acknowledge or even mention them cuts off a vital channel of support for both the child and the parent.
Families navigating pediatric brain vessel disease are under immense emotional pressure. The trauma doesn’t end with survival. In fact, that’s often when it begins. A referral to a nonprofit support network is not a “bonus.” It is part of whole-child healing.
The mental side of recovery is just as critical as the physical side. While doctors and specialists are treating the hemorrhage, the seizures, and the swelling, nonprofits are helping with the hearts—the identity crises, the friendships lost, the fears of recurrence.
This work does not compete with medicine. It completes it.
Social workers do extraordinary work, but they are often overwhelmed and spread across too many patients. And they may not know about the most disease-specific advocacy organizations available. That’s where doctors—especially specialists—can make all the difference. A single sentence can change a family’s future:
“There’s a nonprofit that supports families like yours. They can help.”
It’s time to stop treating advocacy groups as optional side projects. They are essential partners in care—and they should be treated that way.
I did not write this article to criticize doctors. I wrote it because I believe in them.
I’ve seen what’s possible when a doctor leans in—not just with their training, but with their empathy. I’ve seen what happens when they take an extra minute to explain, an extra call to connect, an extra ounce of courage to say, “We don’t know everything, but you don’t have to do this alone.”
That’s all any parent wants. Not perfection. Not magic. Just a team. A team that sees our child the way we do—not as a chart, not as a brain scan, but as a whole person with a whole life ahead of them.
The system needs to change. We need interdisciplinary coordination that happens by design, not by accident. We need safety education that’s integrated, not avoided. We need space at the table for nonprofits, not silence in their place. And we need doctors to understand that while they treat the body, families carry the soul of the child’s recovery.
To every physician reading this: Partner with us. Trust that families, advocates, and organizations like AVM Alliance are not here to undermine your expertise—we are here 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, a 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.