For families with children who face rare medical conditions, hearing that treatment will require neurosurgery a tremendous moment. Immediately, you put deep fear and arise critical questions: What will surgery require? How will recovery look like? How will our child be affected?
But in the health of children in Stanford, rare cases of neurological pediatric surgery are the base. There, doctors and surgeons cooperate in advanced medical treatments that change the path of the patient’s results and the future of neurosurgery in the same children.
Dr. Kormak Maher is the head of children’s neurosurgery at Stanford for Children. The Atlantic Re: Think Walked with him about the current scene of children’s neurosurgery and how to create children’s innovation in Stanford and care for the patient a better future for children with rare medical conditions.
How are families immediately affected by the diagnosis of rare diseases?
Dr. Kormak Maher
It may be very frustrated for families with a child with a very rare condition. They will resort to their usual resources and leave without much important answers. Sometimes, depending on the place where someone lives, there may not be a local provider network with experience. But the great thing in our Internet age is that it is extremely easy to define experienced centers, such as Stanford Children, which can work with local service providers and get families answers they need. I think it is really important for some of these families who suffer from rare problems to communicate with patients and other families who go through similar things, to learn from the experience of these other families, what they have gone through, and what did not work.
What is Stanford children to young patients and their families that other hospitals cannot or not?
Dr. Kormak Maher
I think there is a mix of things that Stanford children seek. First, we offer a high degree of specialized care where we have enough people who have enough specialized interests. So when your child comes to see us, although he may have a rare case, it will not be rare for us. We are able to send you to the right person who has a specialized interest in this condition.
The other part of this is innovation. It is relatively common for our service providers to be researchers in these circumstances as well, whether in the laboratory or with clinical research. They are trying to push the field forward. This means that they are not only thinking about the situations that are presented to them, but also think about a global form of this disease. They want to provide families in the future brighter as there will be better and more effective treatments.
How do you and your team deal with a treatment plan for complex or rare neurological conditions?
Dr. Kormak Maher
You cannot have one approach to everyone. Often, a multidisciplinary approach includes many different service providers. If you look at our cranial practice, for example, we have two neurosurgeons, plastic surgeons, ophthalmologists, genetics, childhood development experts, social workers, etc., they see all families in the same clinic. Sometimes, as a neurosurgeon, we relied heavily on doctors and other specialties to tell us when the patient is more convenient to obtain a nervous surgical procedure. In some cases, we rely on the ophthalmologist to tell us exactly what the results of the eye are, the extent of its risk, and whether or not this conclusion can be justified. With complex conditions, you really need to combine service providers under one roof to better serve these families and determine the best treatment.
Is this level of cooperation unique for Stanford children?
Dr. Kormak Maher
Regardless of the experience of anyone in his field, there is an end to what we can do as an individual. The whole thing is about the team you are. It is a great thing in Stanford – I find that when I see something and feel that I am deeply or experienced, I can find someone on the campus with this experience and I can help me.
There are some rare tumors that we take care of, such as vocal tumors, which are very rare in children but are very common in adults. When we do this, we will bring an expert in the sound nervous tumor in Stanford and work in coordination with them to get the best possible surgical results. The same with a condition called Tic Douloueux, or twinning nervous pain, which is a relatively common neurological condition in adults. The presence of this type of open approach is very important for us.
How do Stanford children approach sick families when dealing with rare cases?
Dr. Kormak Maher
You have to meet patients and families where they are. Various families have different therapeutic priorities, and thus really need to spend time speaking to families to understand them before developing a treatment plan. We have a large team of nurses and social workers we are working with. They meet with each family before bringing the patient to the hospital. They help the family to understand the shape of the hospital, determine expectations, and make sure that their questions are answered – and to ensure that, in turn, we understand what matters to that family.
We try to reduce barriers as much as possible for each family. For example, a single thing that has become increasingly common is that families will have translation needs. We always try to obtain a personal translator when we conduct surgical discussions with families before surgery in the clinic as well as in the hospital. This has made a meaningful difference in our ability to really communicate with families and make sure to share common goals of the treatment plan.
How important is the care of follow -up?
Dr. Kormak Maher
It is very important. One of the most common questions asked by patients is “What is the period of recovery?” Even after all these years, I do not think I have reached a sufficient answer to that, because recovery is practical. It is not a time in time. I would like to say my goal, more than anything else, is that I want them to be able to put this episode, which in most cases is very sad for families, in the rear vision mirror. Fortunately, most cases that children or surgical allow us to allow us to reach this place with our patients.
When it comes to rare nerve surgery for children, do you find that there are any wrong concepts that people may have?
Dr. Kormak Maher
If your child has to have neurosurgery in children, I think, for many families, this is only about the worst news he can imagine. People are usually very afraid of hearing that they have offered them an appointment to see the nerve surgeon in children. This is the wrong concept, because we are certainly dealing with serious diseases, and I do not mean that every story has a happy ending in our field – but there is a lot of happy ends. In most cases, we can offer children a natural, happy and healthy future.