Where Rare Cases Are the Norm – Sponsor Content
For families with children facing rare medical conditions, hearing that treatment will require neurosurgery is an immensely overwhelming moment. Instantly, deep fear sets in and critical questions arise: What will the surgery entail? What will recovery look like? How will our child be affected?
But at Stanford Medicine Children’s Health, rare pediatric neurosurgical cases are the norm. There, physicians and surgeons collaborate on cutting-edge medical treatments that change the trajectory of patient outcomes and the future of pediatric neurosurgery itself.
Dr. Cormac Maher is the Chief of Pediatric Neurosurgery at Stanford Children’s. The Atlantic Re:think spoke with him about the current landscape of pediatric neurosurgery and how the Stanford Children’s ethos of innovation and patient-first care creates better futures for children with rare medical cases.
How are families immediately affected by a rare disease diagnosis?
Dr. Cormac Maher
It can be very frustrating for families that have a child with a very rare condition. They’ll turn to their usual resources and be left without a lot of important answers. Sometimes, depending on where somebody lives, there may not be a local provider network with expertise. But the great thing about our internet era is it’s very easy to identify centers with expertise, like Stanford Children’s, that can work with local providers and get families the answers they need. I think it’s also really important for some of these families that are experiencing rare problems to get connected with other patients and families that have been going through similar things, to learn from the experience of these other families, what they’ve gone through, what worked, and what didn’t work.
What does Stanford Children’s offer young patients and their families that other hospitals can’t or don’t?
Dr. Cormac Maher
I think there’s a combination of things that Stanford Children’s really strives for. First, we provide a high degree of specialized care where we have enough people that have enough specialty interests. So when your child comes to see us, although they may have a rare condition, it won’t be so rare for us. We are able to send you to the right person who has a specialty interest in that condition.
The other part of that is innovation. It’s relatively commonplace for our providers to be researchers in these conditions as well, whether in the laboratory or with clinical research. They’re trying to drive the field forward. And that means that they’re not only thinking about the situations as they’re presented to them, but they’re thinking of a larger global picture about this disease. They want to offer families a brighter future where there’s going to be better, more effective treatments.
How do you and your team approach a treatment plan for complex or rare pediatric neurological cases?
Dr. Cormac Maher
You can’t have a one-size-fits-all approach. Frequently, a multidisciplinary approach involves lots of different providers. If you look at our craniofacial practice, for instance, we have neurosurgeons, plastic surgeons, ophthalmologists, geneticists, childhood development experts, social workers, and so on, all seeing families in the same clinic. Sometimes, as a neurosurgeon, we rely very heavily on physicians and other specialties to tell us when a patient is best suited to have a neurosurgical procedure. In some cases, we rely on an eye doctor to tell us exactly what the eye findings are, how serious they are, and whether or not that finding can justify a neurosurgical procedure. With complex conditions, you really need to bring providers together under one roof to best serve these families and to decide what the best treatment is.
Is that level of collaboration unique to Stanford Children’s?
Dr. Cormac Maher
No matter how experienced anyone becomes in their own field, there’s a limit to what we can do as an individual. It’s all about the team you’re on. It’s a great thing about Stanford—I find that when I’m seeing something and I feel that I’m out of my depth or expertise, I can find somebody on campus who has that expertise and can help me.
There are certain rare tumors that we take care of, such as acoustic neuromas, which are exceedingly rare in children but quite common in adults. When we do those, we’ll bring over an acoustic neuroma expert from Stanford Medicine and work in concert with them to get the best possible surgical outcome. Same thing with a condition called tic douloureux, or trigeminal neuralgia, a relatively common neurosurgical condition in adults. Having that sort of open-ended approach is very important to us.
How does Stanford Children’s approach patient families when handling rare cases?
Dr. Cormac Maher
You have to meet patients and families where they are. Different families have different treatment priorities, and so you really need to spend some time talking to the families to understand them before making a treatment plan. We have a large team of nurse practitioners and social workers that we work with. And they meet with every family before the patient is brought to the hospital. They help the family understand what the hospitalization is going to be like, set expectations, and make sure their questions are getting answered—and ensure that we, in turn, understand what matters to that family.
We try to lower barriers as much as possible for every family. For instance, one thing that is becoming increasingly commonplace is families will have translation needs. We try to always have in-person translators when we’re having surgical discussions with families preoperatively in the clinic as well as in the hospital. That’s made a meaningful difference in our ability to truly connect with families and make sure that we’re sharing common goals for the treatment plan.
How important is follow-up care?
Dr. Cormac Maher
It’s extremely important. One of the most common questions I get asked by patients is “How long is the recovery?” Even after all these years, I don’t think I’ve ever come up with an adequate answer for it, because recovery is a process. It’s not a point in time. I like to say that my goal, more than anything, is I want them to at some point be able to put this episode, which in most cases is quite distressing for families, in their rearview mirror. Fortunately, most pediatric or surgical conditions do allow us to get to that place with our patients.
When it comes to rare pediatric neurosurgery cases, do you find that there are any misconceptions that people may have?
Dr. Cormac Maher
If your child has to have pediatric neurosurgery, I think, for many families, that’s just about the worst news they could imagine. People are usually very frightened hearing that they have been offered an appointment to see a pediatric neurosurgeon. That’s the misconception, because certainly, we deal with serious diseases, and I don’t mean to imply that every story has a happy ending in our field—but there are a lot of happy endings. And in most cases, we can offer children a normal, happy, and healthy future.
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