Pediatric neurosurgeon Lori McBride, MD, saw something amazing happening in her hometown of Baton Rouge. She watched Our Lady of the Lake Children’s Hospital begin building a brand new freestanding hospital, creating a statewide network of providers to treat children across the state, and increasing access to services by adding pediatric specialists to its team of providers. She knew she wanted to be a part of this team and to help shape the landscape of pediatric healthcare here in Louisiana. In July, she officially joined Our Lady of the Lake Children’s Health as the chief of pediatric neurosurgery.
“Dr. McBride is one of the top pediatric neurosurgeons in the state and a game-changer in terms of the patients we are able to treat and the high level of care they will receive,” said Shaun Kemmerly, MD, chief medical officer for Our Lady of the Lake Children’s Hospital.
“Dr. McBride’s decision to join our team is a testament to the talented providers our future freestanding children’s hospital will attract and why it is such an important resource for the community.”
The freestanding Our Lady of the Lake Children’s Hospital, set to open in 2019, will continue to provide exceptional care for more than 100,000 patients annually from Louisiana and across the Gulf South.
“It’s a really exciting time to join the team here while they’re making preparations to assemble the team that will open the new hospital,” Dr. McBride said. “What really sealed the deal is when I came here and started meeting everyone, and it’s pretty clear that they are working toward a common goal of doing the right thing for the patients, setting the hospital up correctly, and it was extremely refreshing for me to see.” Dr. McBride is one of only eight pediatric neurosurgeons in Louisiana and has more than 20 years of experience in specialty areas such as neurotrauma, epilepsy and brain tumor surgery. She performed the first-ever endoscopic craniosynostosis release in Louisiana, and has done more than 100 since — including on a special patient named Marleigh Walley.
When Marleigh’s parents, Rachel and Jon Walley of Gonzales, arrived at the hospital to deliver their baby girl, they had no idea of the journey ahead. Marleigh was born on March 26, 2013 a few weeks before her due date. She looked a little different, but that didn’t raise any red flags. It was her trouble breathing that concerned her doctors.
Marleigh was placed in the neonatal intensive care unit. Her oxygen levels were closely monitored, and she was discharged four days later. But at 3 months old, Marleigh developed a cold and things went downhill from there. She rapidly began losing weight and her health started to decline. She was referred to a genetic specialist, who took one look at Marleigh and told her parents that she was very sick.
Marleigh was diagnosed with failure to thrive — a condition where a child’s weight or rate of weight gain is significantly below that of other children of similar age and gender. She was immediately admitted to the hospital.
“That was really scary because we weren’t prepared to hospitalize our kid,” said Rachel.
While the Walleys were in the hospital, pediatric neurosurgeon Lori McBride, MD, visited their room and discovered that Marleigh had craniosynostosis, a birth defect in which one or more of the fibrous joints between the bones of a baby's skull fuse prematurely before their entire skull has formed.
“It was amazing because Dr. McBride just walked over to her, put her hand on her head, and immediately pointed out the three sutures that were fused.” Marleigh was also diagnosed with Crouzon Syndrome, which, in addition to craniosynostosis, can include additional symptoms such as bulging and misalignment of the eyes, a small nose, and an underdeveloped upper jaw.
After a CT scan and X-rays, Dr. McBride confirmed that Marleigh needed surgery as soon as she was healthy enough for her tiny body to handle it. Two months later, in October 2013, she was ready for her first skull surgery at just 6 months old.
Dr. McBride told the Walleys about a relatively new procedure at that time — an endoscopic release — where the surgeon makes tiny incisions on the skull to go in with an endoscope, or small camera, and a small tool that removes the bone over the fused suture. The catch? Marleigh would have to wear a molding helmet 23 hours a day for an entire year, and her parents would have to bring her to 15 to 20 appointments that year to monitor her head growth and helmet. But if they could do that, then Marleigh was a prime candidate for this type of surgery. “We didn’t even discuss it,” Rachel said. “We knew that was the right thing for Marleigh. The entire process was flawless. Dr. McBride did excellent in the procedure and we began helmet therapy. Everything started out wonderfully.”
Then, two months later, Marleigh developed hydrocephalus — a condition where excessive cerebrospinal fluid (CSF) surrounds the brain and spinal cord. The accumulation of CSF results in an abnormal widening of ventricles in the brain, creating a potentially harmful pressure. Hydrocephalus, left untreated, can be fatal.
So just days before her first Christmas, Marleigh was back in the hospital having surgery to get a ventriculoperitoneal shunt, or “VP shunt.” VP shunts are surgically placed inside the brain ventricles to divert fluid away from the brain and restore normal flow and absorption of CSF. To make matters more complicated, the shunt needs a place to drain, yet Marleigh was supposed to be wearing a molding helmet covering her entire head. Fortunately, her orthotist was able to customize a helmet to allow room for the shunt, and Dr. McBride was there to cheer her on through the entire process.
“Dr. McBride was so confident and reassuring and told us we were going to figure it all out,” Rachel said. “She really gave us confidence to know Marleigh was going to get through this.”
Marleigh needed one more surgery the following January for another fused suture, and in total had four surgeries in her first year of life — not something most new parents prepare for.
“We felt really helpless several times throughout this journey,” Rachel said. “With each new complication we questioned if we were making the right decisions.”
But those difficult decisions have paid off for Marleigh. Today she is a happy, healthy 4-year-old girl who has caught up to her peers developmentally and in some cases exceeds them.
“Now, for the first time ever, she is at an average height and weight as others her age,” Rachel explained. “She has a great personality. She is really funny, friendly, and outgoing. She communicates so well and is usually the first to approach someone.”
Dr. McBride said she has enjoyed watching this transformation.
“When you talk to her now, it’s like talking to any other 4-year-old. It’s neat for me to get to watch her really come along and thrive and then watch her parents grow their confidence as well.”
She credits the success of Marleigh’s treatments in large part to her parents and how proactive they were in her healthcare. “Marleigh never missed an appointment, and the Walleys followed post-op care instructions to a T.”
Another key to Marleigh's success is that her family no longer needs to travel to see their favorite neurosurgeon. Their sense of humor helped as well. The Walleys found an online support group for families with kids that had craniofacial conditions. Through that organization she purchased a onesie that said “I heart my neurosurgeon,” and dressed Marleigh in it for her first skull surgery.
That started a trend of humorous t-shirts. Another one read “Skull surgery: Nailed it!” Dr. McBride has a framed photo in her office of Marleigh wearing one of her favorites that reads “I’ve had work done.”
Marleigh has had a lot of “work done,” and she will likely need more procedures in her pre-teen years to do a mid-face advancement and expand her narrow sinuses. There is also a likelihood that she may need another surgery to replace her shunt in the future.
As surgery has evolved, so have the many amazing tools and technologies available for use in pediatric surgery. For Dr. McBride, she has relied on improved technology including a computer guidance system that gives a targeted CT scan or MRI scan. Those images can be sent to a system in the operating room that has a camera array.
“As I’m operating, I can look up on the TV screen and see the patient’s MRI with the instruments super-imposed over the brain as I’m working in real time so I can follow their movements through the brain,” she explained.
George Zakhary, DDS, MD, a pediatric craniomaxillofacial surgeon with Our Lady of the Lake Children’s Health, has benefited tremendously from virtual surgical planning in his practice. He is able to take a CT scan and have a sterilizable guide made to determine where to make incisions during surgery. These guides are produced by a 3D printer and are placed directly on the bone so he and his team know exactly where to cut based on the pre-operative CT scan.
“It’s made a huge difference in pediatric craniofacial surgery because of the accuracy you need to move things around in the face and the skull,” he said. “In the past it was difficult to be completely accurate, but with these new guides, I am able to be much more precise.”
Our Lady of the Lake Children’s Hospital was also one of the first hospitals in Louisiana to off er pediatric robotic surgery. Robotic surgery, or robot-assisted surgery, allows surgeons to perform many types of complex procedures with more precision, flexibility and control than is possible with conventional techniques. Robotic surgery is an advanced form of minimally invasive or laparoscopic surgery where surgeons use a computer-controlled robot to assist them in certain surgical procedures.
“In pediatric surgery, many of the most complex operations are still performed most safely and effectively using an open technique, particularly in newborns and infants,” said James Wood, MD, pediatric surgeon with Our Lady of the Lake Children’s Health. “But the advent of robotic technology means that a growing number of these extremely complex procedures can now be done using tiny incisions — often no larger than the width of an ink pen.”
Pediatric surgery is increasingly heading to a place where technology is focused on patient-centered care and improving not just their medical outcomes but the quality and length of their care and recovery.
“Things will continue to get more minimally invasive, and technology will make surgery more accurate, shorter, and safer,” Dr. McBride explained. “All of the new advances on the horizon are exciting because they’re geared toward making the patients’ stays shorter, and the surgeries more effective and safer for the patient.”
The Walleys are happy to see these trends as Marleigh’s journey with Crouzon Syndrome continues, and they are thankful to have Dr. McBride and a team of child focused specialists with Our Lady of the Lake Children’s Health who will be there for her every step of the way.
“Her case has been very complicated and we have just been blown away by the incredible results,” Rachel said. “We are so fortunate to have such an amazing team and the best level of care there is.”
Kids are not just “little adults,” and all providers with Our Lady of the Lake Children’s Health who treat pediatric patients are highly trained to meet their specialized needs.
“Adult patients generally make their own decisions; they talk to you, and they can speak to you in times of illness and tell you exactly how they feel and it can help draw you to a diagnosis,” explained Faith Hansbrough, MD, chief of pediatric surgery who has been with Our Lady of the Lake for more than 30 years. “Children can’t necessarily do that.”
There are other considerations associated with pediatric anesthesiology, according to Tiffany Bourgeois, MD, certified pediatric anesthesiologist with Our Lady of the Lake Children’s Health.
“From the neonate to the teen, they have different requirements on how they metabolize drugs, how their respiratory system and central nervous system are developed, and you have to take that into account,” she said. “As a child grows, we adjust our plans. You can’t just make a simple recipe like you do for adults. For each child you have to come up with an individualized plan.”
While kids and adults obviously differ in how they are medically treated, arguably the most important difference is in their emotional and psychological needs.
That is why Our Lady of the Lake Children’s Hospital has entire teams specifically trained to work with children – from the surgeons, to the anesthesiologists, to the nurses and even Child Life specialists.
A Child Life specialist’s role is to help promote positive coping throughout a hospital stay. There are 10 Child Life specialists at Our Lady of the Lake Children’s Hospital with one specifically designated to work with pediatric surgery patients.
Dana Achary, the Child Life specialist for surgical services, helps children through their surgery experience from the time they arrive until they are discharged.
“We make sure that not only are a patient’s medical needs being met, but they’re also getting the appropriate play that they deserve, have access to therapeutic activities, and they understand why they’re here in the hospital,” she explained. “I also walk them through procedures and make sure they know what’s next and what to expect while they’re here in the hospital.”
Achary offers pre-surgery tours for patients to familiarize them with all of the areas of the hospital they will visit during their stay and help prepare them for everything they will see and everyone they will meet. There are also special tactics she employs to help make surgery less intimidating for the little ones.
She uses special dolls to demonstrate placing IVs or to explain what may be going on in a particular patient’s body. She uses special language to quell any possible fears that medical terminology may trigger. For example, she is careful not to refer to anesthesia as being “put to sleep” but as to getting “sleepy air.” Patients also are allowed to decorate their “sleepy masks” with stickers and choose a flavor of lip balmf to scent their sleepy air.
For kids 10 and younger, anesthesia is given through this induction mask rather than an IV, so Achary likes to reassure these smaller patients that they’re not going to feel any of the pain they might fear.
“I like to explain to them that there will be no pokes, no sticks, and that none of the things I have are things that are going to hurt them,” she said. “Usually I can see the relief pretty quickly when I tell them that and you can see them start to relax and be able to breathe a little bit.”
The nurses in the pediatric operating rooms are also specially trained to work with children. According to Olivia Hebert, RN, one of seven nurses that work primarily with pediatric surgery patients, this makes all of the difference.
“You can tell whenever you’re in a room that is full of people who have taken their time to specialize in pediatrics versus people who may know a lot but don’t do pediatrics every day,” she said. “It’s not a lack of knowledge or a lack of skill or even a lack of care, but with kids there are so many more details to think about. It takes a full circle of people specialized in pediatrics to truly make that experience.”
That experience will only improve when the new freestanding Our Lady of the Lake Children’s Hospital opens in 2019, as the entire facility has been designed for kids and with their special needs in mind.
“Having a freestanding hospital that is completely dedicated to the care of children is going to change the landscape of healthcare for children in this area dramatically,” said Dr. Bourgeois. “It’s long overdue, and it’s going to be great for not only Baton Rouge but this entire state.”