Looking Back…Moving Forward: Building Bridges Between Pediatric and Adult Hydrocephalus

Dr. Marion (Jack) Walker has dedicated the last 37 years of his life to pediatric neurosurgery, currently practicing at Primary Children’s Medical Center and serving as a professor of neurosurgery at the University of Utah, School of Medicine. In addition to being a beloved neurosurgeon in our community, he is an active advocate for hydrocephalus awareness and research, as well as a proponent for educating his adult-focused colleagues on the needs of children transitioning to adult medical services. As we continue our interview series in commemoration of our 30th anniversary, Dr. Walker reflects on his career and long-standing relationship with the Hydrocephalus Association as a member of the Board of Directors and the chair of the Medical Advisory Board, as well as the challenges he sees facing the hydrocephalus community. To honor his years of service to our community, Dr. Walker was recently awarded the Vision Award for Service at the first annual Hydrocephalus Association Vision Dinner which took place on October 10, 2013, in New York City.

HA: How did you come to be a pediatric neurosurgeon?

DR. WALKER: My father was a family physician. I always knew I wanted to be a doctor, and with my personality type, I was pretty sure I would be a surgeon. Fairly early in medical school the neurosciences interested me the most, so I gravitated in that direction. It was a natural progression. When I started my neurosurgical residency, caring for children was the part of my training that excited me most. It didn’t take long for me to realize that pediatric neurosurgery was what I really wanted to do.

In those days, no one really did fellowships. Pediatric neurosurgery was done only in a few centers. There were few people who said pediatric neurosurgery was their chosen specialty. At the same time I was making my decision to subspecialize, some of my colleagues, such as Drs. David McLone, Fred Epstein, Donald Reigel, Michael Scott, Gordon McComb, Harold Rekate and others, were also discovering that this was what they wanted to do. Having done an internship in Salt Lake City, I knew there was an excellent children’s hospital there, and I knew this was an opportunity to start doing pediatric neurosurgery. It all fell into place.

HA: What percent of your time as a pediatric neurosurgeon is devoted to treating hydrocephalus?

DR. WALKER: That’s a good question. It takes more than its share, in some ways. Roughly between 30-40% of the cases we do are related to hydrocephalus – third ventriculostomies, shunts, shunt revisions. But, since shunts can present urgently, hydrocephalus takes up more of our emergent surgery than other procedures do.

HA: How did you first become involved with HA?

DR. WALKER: I was curious about what kind of information was available to patients. I was aware of HA peripherally due to looking for information for my patients. The HA founders often came to our pediatric neurosurgical meetings, so I met them there. I learned that HA had a conference for patients and families. I was invited to attend the third HA conference and I have been going strong with the association ever since.

HA: When did you become a member of the Board of Directors?

DR. WALKER: I joined the board around 2008. Being a board member and working with the members of the Medical Advisory Board (MAB) lead to my becoming the chair of the MAB.

HA: What impact do you feel HA has made in the medical community?

DR. WALKER: The association has had a huge impact and has left a positive impression on the pediatric neurosurgical community. As neurosurgeons we know that HA is the trusted place patients can obtain information and support, and that HA is actively trying to support research. HA is significantly more visible now than it was 6 or 7 years ago. I think as we go forward, we will see increasing appreciation of the value of HA from our adult neurosurgical and neurological colleagues.

HA: What impact do you feel HA has made on the general public?

DR. WALKER: HA is the first group that comes to mind in terms of finding support for families. When I first got involved with HA, I assumed HA was a national organization where everyone went to find support. I was surprised to find that it was still essentially a regional organization. Over time, it grew and grew. The progress that’s been made is astounding. Now it is THE organization for hydrocephalus support, whereas before it was one of several smaller ones.

HA: Where would you like to see HA 5 years from now?

DR. WALKER: I would like to see HA more financially sound. If we keep doing what we’re doing, 5 years from now we will have the money we need to support research as well as all of the support and educational needs of our families.

HA: What message do you have for the Founders of HA?

DR. WALKER: Look at what you’ve done! Look at what a marvelous thing has been accomplished. It is a legacy that will truly last forever.

HA: What challenges do you see for us making change?

DR. WALKER: From a hydrocephalus patient perspective, the challenges are knowledge, understanding the condition and trying to cope with the condition. As the kids get a little older and into school, sometimes they feel so different that they try to disappear, so to speak. It’s a challenge for HA, parents, and caregivers to help patients understand that it’s important for them to accept their condition, and do the best they can to deal with it rather than hiding or ignoring it.

Another challenge for patients is transitioning from pediatric to adult care. Pediatric hydrocephalus is quite different from typical adult hydrocephalus. It is still a challenge to guide our patients into the right system. For example, in my practice, I have several adult hydrocephalus-focused colleagues who take most of our graduates. They now have experience with pediatric patients who have transitioned so they’re willing to take them. In some practices, the pediatric neurosurgeon can follow their patients into adulthood. In some situations, however, the hospital may not allow patients to be admitted beyond 18 years of age.

HA: Can HA play a role in changing that?

DR. WALKER: It comes down to our adult colleagues accepting these patients. The visibility of HA helps. The more HA becomes involved with adult hydrocephalus, the more our adult colleagues will see the importance of the differences between children and adults. One of the upsides of getting involved with the adult-focused hydrocephalus clinical research group is helping the adult neurosurgeons to appreciate these differences.

The research challenge, in a nutshell, is money. Money is what it’s going to take to stimulate our young colleagues to want a career in and to study hydrocephalus. There are some heroes among us who inspire these young people. I’m so grateful to them. We have made much progress with basic science and understanding hydrocephalus, and it has influenced the clinical applications of what we do.

At the Hydrocephalus Clinical Research Network (HCRN) centers, our shunt numbers are down. At my hospital, it was once common to do about 400 shunt operations a year. Last year we did 290. We have seen this change over the past 3 years while following the HCRN shunt protocols. This kind of improvement is what HCRN has been able to accomplish with HA’s financial support. These types of improvements in patient care and outcome, coming out of research, stimulate protocols that make a big difference in our treatment.

In a nutshell, we need money to further the kind of research we have been supporting and the kind of research we want to stimulate. Without continuing monetary support, HA will be challenged to continue to support research and to make hydrocephalus more visible.

HA: What message do you have for individuals living with hydrocephalus or their family/caregivers?

DR. WALKER: We’ll never give up; we’ll never stop trying. There are so many different causes of hydrocephalus, but I think we will find the appropriate ways to treat the different types. We will find a cure for some forms of hydrocephalus.

HA: What message do you have for the general public about individuals touched by hydrocephalus?

DR. WALKER: The general public doesn’t know what hydrocephalus is. They don’t know how to pronounce the word or what it means. It comes down to continuing the efforts of HA to raise awareness.

HA: Do you have a fond memory of your time practicing medicine and serving the hydrocephalus community?

DR. WALKER: There are so many it would be difficult to pick just one. As pediatric neurosurgeons we grow up with our patients. We bond with them. They become a part of our family. It is a joy to see an infant grow and develop when hydrocephalus is under control. It’s gratifying when a patient who has had significant shunt troubles – repeat revision after repeat revision – finally has a surgery that is successful. They come back to see you a month later and they’re doing great. Then six months later and they’re doing great. And then a year later. You just feel so good for these patients who get out of that cycle. But, it’s hard to pin down just one fond memory when caring for these many special kids.