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Inside Pediatrics

Hematology and Oncology, Inside Pediatrics

Improving the Diagnosis of Kidney Disease in Patients with Sickle Cell Anemia

Jeffrey Lebensburger, D.O., was recently awarded a prestigious National Institutes of Health R01 grant to identify early signs of kidney disease in children with sickle cell anemia.

Up to 70 percent of adults with sickle cell anemia will develop chronic kidney disease, many of whom will require dialysis or transplantation. But since the damage often begins in childhood, identifying the early signs of kidney disease could shift that trajectory.

That’s the goal of Jeffery Lebensburger, D.O.’s research at Children’s of Alabama, for which he was recently awarded a prestigious National Institutes of Health R01 grant. Julie Kanter, M.D., who co-directs the Comprehensive Sickle Cell Center at the University of Alabama at Birmingham (UAB), is also involved.

“This project will develop a novel approach to monitoring changes in kidney function over time that is specific for patients with sickle cell anemia,” said Lebensburger, who directs UAB’s hematology section in the Division of Pediatric Hematology. “This will improve our clinical capacity to identify sickle cell anemia patients who are at risk for chronic kidney disease and who may benefit from additional prospective therapies.”

The early signs of kidney disease are usually silent. By the time obvious markers like protein in the urine develop, the loss of kidney function is often too advanced to reverse. “We need to control it in childhood,” Lebensburger said. Particularly since people with sickle cell anemia who go on dialysis are eight times more likely to die from kidney-related complications within seven years than those without the disease.

“Given the high mortality early in life from kidney disease, it is vital that we monitor kidney disease progression in children and adults,” he said. But the standard glomerular filtration rate (GFR) blood test provides, at best, a “guess” of kidney function. The tests also weren’t developed for sickle cell patients, he said. The gold standard, a measured test of how well the kidney eliminates a contrast agent, takes four to six hours and is very expensive.

“For us to appropriately track kidney function in this population and prevent the devastating complications of renal disease in our patients, we need a GFR equation that is validated for those with sickle cell, not for other populations,” Lebensburger said. Which is what his research is designed to do.

“We’re starting from scratch to develop this,” he said, performing normal blood work in 200 children and 200 adults and then developing a new calculation of kidney function that is valid for our sickle cell patients. “Then we’ll know what’s happening and can better track patients’ kidney function and prevent the devastating effects of kidney disease.”

Inside Pediatrics, Nephrology, Uncategorized

Food as Medicine: Bringing Nutrition to Dialysis Patients with Food Insecurity

Children’s of Alabama Dialysis Director Sahar Fathallah-Shaykh, M.D., and her team developed the Food as Medicine Program in spring 2020. Families who qualify based on income and expenses receive a monthly box of non-perishable supplies for their child, as well as support from a renal dietician in how to use them.

When it comes to kids on dialysis, food really is medicine. “We can provide state-of-the-art dialysis treatment and medications, but if they don’t follow a strict diet, they don’t do well,” said Children’s of Alabama Dialysis Director Sahar Fathallah-Shaykh, M.D. That includes a higher risk of hospital admission, infections and even mortality. Plus, it may make them ineligible for transplant because of poor healing, increased risk of infection and poor outcome.

The strict diets are very low in potassium, salt and phosphorus, with no processed or fast food. “This leaves a majority of our patients with a very difficult-to-obtain diet,” she said, particularly since half have significant food insecurity. “If we can’t meet the basic need of food, we’re not helping them that much.”

Which is why she and her team developed the Food as Medicine program in the spring of 2020. Families who qualify based on income and expenses receive a monthly box of non-perishable supplies for their child, as well as support from a renal dietician in how to use them.

“When we started we were hoping to provide them with fresh ingredients once a week, but then COVID came,” Fathallah-Shaykh said, restricting the ability of families to pick up the food on a weekly basis.

Packages include almond milk, rice, pasta, butter, animal crackers, dried herbs and seasonings, grains, cereals, oils for cooking, canned fruits and unsalted vegetables, canned tuna and chicken, and even snacks such as unsalted pretzels and Rice Krisipies Treats. Once the pandemic ends, “we hope that fresh vegetables will join the mix,” Fathallah-Shaykh said.

The unit typically has about 25 patients on dialysis and about half qualify for the program. They claim their boxes when they come for treatment.

The program has been funded, in part, by the Children’s Table fundraiser, a food event and fundraiser to raise awareness about the importance of dietary choices in the health of children and management of pediatric disease. In past years, participants enjoyed tasting plates, signature cocktails, beer, wine and dessert from some of the top chefs in the state. The event has raised more than $100,000 over the past three years to support families’ nutritional needs.

Now the team is trying to figure out how to keep the program going given the COVID-19 pandemic and the challenge it presents for in-person events.

“Without that funding,” Fathallah-Shaykh said, “these children may die if we don’t help them with their basic dietary needs. It’s really that serious.”

Inside Pediatrics, Neonatology, Nephrology

Teaching the Rest of the World How to Care for Babies and Small Children on Dialysis

A Children’s of Alabama team member attends to an infant patient simulator during a NICKS presentation in the Children’s Simulation Center. NICKS, the Neonatal and Infant Course for Kidney Support, is an education program combining specialist instruction, parent perspectives and hands-on training and support.

Children’s of Alabama provides more days of dialysis to babies than any institution in the world. Indeed, Children’s nephrologists and intensivists pioneered the use of dialysis in newborns and young children by retrofitting a machine used for adult heart failure patients. Now, with U.S. Food and Drug Administration-approved dialysis machines for young children on the market, the team has been inundated with requests from other hospitals for training and information.

The result is the Neonatal and Infant Course for Kidney Support (NICKS), a one-and-a-half day educational program that combines didactic teaching from a variety of specialists, an opportunity to have a parental perspective, “hands-on” skills sessions and virtual small group case simulations.

 “As medicine advances and we continue to create innovative answers to problems, it is imperative that we offer up what we have learned in a practical, ‘hands-on’ way,” said course co-founder and acute dialysis nurse practitioner Kara Short, MSN, CRNP.

“There’s a huge need across the country and across the world for people to understand how dialysis is different for newborns and small kids,” said course co-founder David Askenazi, M.D., MsPH, FASN, who directs the Pediatric and Infant Center for Acute Nephrology (PICAN) at Children’s. “We cover the whole gamut of how to build a program with the hope that we can educate them, inspire them and provide them with tools so they can go back to their institutions and succeed in caring for small kids.”

While the course was originally designed to be held in person, COVID-19 forced it online. That hasn’t hurt its popularity. The first course, held in July, sold out in a few days and by early September there was a 20-person waiting list for the October program. Participants have come from throughout the world, including Israel, Qatar, and Canada. The interest has been so great that Short and Askenazi doubled the number of participants from 20 to 40.

“The feedback has been tremendous,” said Short. Among the comments she’s received from participants:

  • “I loved this! I was very impressed with the overall quality. Well done, I really enjoyed it!”
  • “The conference was extremely well run, efficient and very informative. I know I learned a lot.”
  • “Excellent job on your inaugural course. Would highly recommend.”
  • “Enjoyed attending with lots of good information.  Looking forward to reviewing policies to help grow our own program.”

The plan is to continue offering the virtual course every three to four months. For information, contactDavid Askenazi, M.D., MsPH, FASN at daskenazi@peds.uab.edu or Kara Short, MSN, CRNP at kara.short@childrensal.org.

Inside Pediatrics, Nephrology

Working to Improve Kidney Health in Developing Countries

Children’s of Alabama pediatric nephrologist Erica Christen Bjornstad, M.D., Ph.D., MPH, hopes to bring her deep knowledge of unmet nephrology needs in underdeveloped countries through the hospital’s existing relationship with the Centre for Infectious Disease Research in Zambia (CIDRZ).

Pediatric nephrologist Erica Christen Bjornstad, M.D., Ph.D., MPH, has been working inglobal health since college. As a Peace Corps volunteer she served as a rural public health volunteer in Ecuador, and in the years after brought her public health expertise to Peru, Afghanistan, Malawi, and Tanzania. In fact, it was her work with trauma surgeons in Malawi, one of the five poorest countries in the world, during her fellowship at the University of North Carolina-Chapel Hill that stoked her interest in acute kidney injury (AKI).

The condition is a significant cause of morbidity and mortality in the post-surgical and ICU setting and is typically diagnosed late in the disease state when severe kidney damage may have already occurred. In poor countries like Malawi, which don’t have the infrastructure required to obtain and run laboratory blood tests, the diagnosis may never come. Patients then develop end-stage renal failure but have little, if any, access to dialysis.

During her fellowship, Bjornstad brought a point-of-care urine dipstick test to Malawi to provide instant results on kidney function. Now at Children’s of Alabama, she hopes to bring that test – and her deep knowledge of the unmet nephrology needs in developing countries— to Zambia through the hospital’s existing relationship with the Centre for Infectious Disease Research in Zambia (CIDRZ). “Zambia is better off than Malawi,” she said, “but still struggles with a lot of scarcities and lab shortages.” COVID-19 has exacerbated those problems exponentially, she said. “Having a point-of-care test would be quite valuable.”

Such partnerships are what enticed her to Children’s in 2019 when she finished her fellowship. It was important, she said, that the pediatrics department at the University of Alabama Birmingham (UAB) wants to build its global health presence in a sustainable way, “not popping in and popping out.”

That means providing the education and support to work alongside a developing country improving its own medical infrastructure. The people who live in the country “are 100 times more prepared to ask the right questions and provide potential solutions that we never would have thought of,” she said, “because they are there and they know what works and what doesn’t.”

The relationships we build with these institutions, if done right, can lead to great changes in both,” she said. “But we have to be careful that it is done in a thoughtful way and that the U.S. side is not doing all the benefitting.” The CIDRZ/UAB partnership, she said, exemplifies sustainability.

But there needs to be more focus on kidney disease. “The need for nephrology is underappreciated and often overlooked in global health until there is a very dire medical emergency,” she said. So finding ways to bring the specialty to areas with few resources – as with a dipstick – is critical. “I can’t take a lab machine on the plane with me,” she said. “But if I can throw some dipsticks in my pack and diagnose AKI, that could be revolutionary.”

Cardiology, Inside Pediatrics

Leading the Nation in Norwood Procedure Results

Robert Dabal, M.D., chief of pediatric cardiothoracic surgery at Children’s of Alabama, attibutes “better resources and the evolution of a well-developed team” to the hospital’s impressive Norwood procedure mortality rate.

It is the most complex cardiothoracic surgery performed in newborns, one in which surgeons literally construct a new, larger aorta for babies born with hypoplastic left heart syndrome (HLHS). Called the Norwood procedure, it must be done within the infant’s first week of life, followed by a second surgery when the baby is 3 to 6 months, and a third at age 4 or 5.

In the past five years, surgeons at Children’s of Alabama have completed 54 Norwoods. Just three babies died, for a mortality rate of 5.5 percent. That compares to a national average of about 15 percent, based on statistics from the Society of Thoracic Surgeons Congenital Heart Surgery Database, which tracks all congenital heart surgeries in the country.  In addition, the one-year survival rate at Children’s is about 90 percent compared to the landmark Single Ventricle Reconstruction trial, which had a one-year mortality rate of about 70 percent.

“We are obviously really proud of where we are,” said Robert Dabal, M.D., chief of pediatric cardiothoracic surgery at Children’s.“It’s a combination of better resources and the evolution of a well-developed team.”

The cardiothoracic program truly took off in 2012, when the Benjamin Russell Hospital for Children opened and the program moved over from the University of Alabama at Birmingham (UAB). Before that, Dabal said, there were just seven pediatric cardiovascular intensive care unit (CVICU) beds; two dedicated pediatric cardiacintensivists; and nurses who took care of both adult and pediatric patients. Just one surgeon performed Norwood procedures.

Today, the Bruno Pediatric Heart Center, which occupies most of the fourth floor of the hospital, boasts a 20-bed CVICU with three surgeons performing Norwood procedures, seven dedicated intensivists and a large pool of nurses who only take care of children.

“We are much better in all phases of care,” Dabal said, including preoperative diagnosis. In the past, only about half of infants born with the condition were diagnosed in utero; today that figure is closer 80 percent. “It’s a testament to the hard work of the obstetricians and pediatric cardiologists who are making the diagnosis,” he said. The earlier notice enables surgeons to better plan for the surgery, ensures the mother delivers at UAB where the newborn can receive immediate care and helps the family begin to process and understand a life-changing diagnosis.

The team continually looks for opportunities to improve outcomes and isn’t afraid of change. For instance, Dabal said, they are now more aggressive about avoiding ventilation and try to get the babies to eat by mouth. They also encourage patient bonding with parents during the first few days after birth, “which we think is very important for later development.”

In addition, everything, from pre-operative to operative to postoperative care has become more standardized, leaving less room for error. While there are numerous techniques for the Norwood procedure, Dabal said, “we’ve tried to standardize our approach better so that all our babies get a very similar operation.”

Another contributing factor to the outstanding one-year survival is a home-based interstage monitoring program Children’s instituted. The hospital was an early national adopter of this program, in which parents use an iPad and special app to closely monitor their baby’s condition and keep nurses notified of any changes. The use of technology allows for much closer follow-up from a distance while still maintaining the same high levels of in-person care in the pediatric cardiology clinic.

But all the statistics in the world can’t make up for the most important improvement the Children’s program has seen, Dabal said, which is improved long-term survival with a good quality of life, the “ultimate goal” with congenital heart disease. “Success in congenital heart surgery can’t be measured in postoperative or one-year outcomes,” he said. “We strive to allow these babies to grow up and live the best lives that they can.”

Cardiology, Inside Pediatrics

Ventricular Assist Devices: Bridging the Gap Between Heart Failure and Transplant

Children’s of Alabama pediatric cardiologist F. Bennett Pearce, M.D., left, spearheaded the use of pediatric ventricular assist devices (VAD) at Children’s and the University of Alabama at Birmingham (UAB).

Ventricular assist devices (VAD), which help patients bridge the gap between late-stage heart failure and transplant or buy patients time while their hearts heal from trauma or infection, have been available for adults since the 1990s. But with no pediatric devices, Children’s of Alabama pediatric cardiologist F. Bennett Pearce, M.D., who, at the time, worked under the umbrella of the  the adult transplant program at the University of Alabama-Birmingham (UAB), tried to adapt adult VAD devices for adolescents and children as young as 12.

But the devices and hardware required to attach them to the failing heart were often too large to fit within a child’s smaller thoracic volume, and the blood capacity was so high the devices had to operate at a very low heart rate, increasing the risk of thrombosis.

That all changed when Pearce read an article about a new pediatric VAD, the Berlin Heart EXCOR, that was just entering clinical studies. He was on vacation at the time and when he returned immediately worked with the UAB team to ensure the university could join the trials.

Their first patient received the Berlin VAD in 2005, making UAB one of the first hospitals in the southeast to perform the surgery. A second child received it a year later. Both were highly successful, Pearce said. One child later received a transplant and the other recovered from myocarditis.

The results of that trial led to the device’s U.S. Food and Drug Administration approval in 2011, and in 2012 investigators from UAB were among the authors of a landmark paper published in The New England Journal of Medicine reporting the results of the trial.

Since then, other devices have entered the market, and the pediatric ventricular support transplant advanced heart failure program moved to Children’s of Alabama where it has flourished. “We have a very experienced team on the pediatric cardiology heart failure side with experienced transplant coordinators, excellent surgeons, outstanding  CVICU staff, and strong clinical research interests in pediatric circulatory support,” Pearce said. “That’s why it works so well today.”

Since 2001, 39 children, ranging from newborns to teenagers, most of whom are bridging to transplant, have received VADs; 27 since the program moved to Children’s. The success rates have improved over time, Pearce said, reflecting improvments in device technology, anticoagulation treatment and accumulated experience. “All patients supported in 2020 have had either successful bridge to transplant or recovery,” he said.

The children remain on the devices for weeks, months, “even close to a year,” Pearce said, often in the hospital. Even those who are discharged, however, require a high level of clinical support. Since many live hours away from Children’s, the team trains local clinicians, family and caregivers in the specialized support these patients need

The greatest advantage of our program, he said, “is that this kind of work, although intense, has the potential for tremendous satisfaction because of the often miraculous outcomes.”

Cardiology, E-News for Referring Offices, Inside Pediatrics

NEW PHYSICIANS JOIN PEDIATRIC CARDIOLOGY

Leslie Collins, M.D., Assistant Professor in Pediatric Cardiology, earned her medical degree at the East Carolina University – Brody School of Medicine. Dr. Collins completed her pediatric residency and pediatric cardiology fellowship at the University of Alabama at Birmingham. Her research/clinical interests include imaging, fetal ECHO, and heart failure and transplant.


Austin Kane, M.D.,AssistantProfessor in Pediatric Cardiologyearned his medical degree at Columbia University College of Physicians and Surgeons in New York, New York. Dr. Kane completed his pediatric residency at Northwestern University Feinberg School of Medicine in Chicago, Illinois. He completed a fellowship in pediatric cardiology at Emory University School of Medicine in Atlanta, Georgia and an additional fellowship in pediatric and congenital electrophysiology. Prior to joining the University of Alabama at Birmingham, he was a pediatric and congenital electrophysiology attending at Providence Sacred Heart Medical Center and Children’s Hospital in Spokane, Washington. 


Khalisa Syeda, D.O., AssistantProfessor in Pediatric Cardiologyearned her medical degree at the University of North Texas in Fort Worth, Texas. Dr. Syeda completed her pediatric residency at the University of Illinois at Chicago and her pediatric cardiology fellowship at the University of Texas Health Science Center in Houston, Texas. Her research/clinical interests include pediatric cardiology, imaging, fetal echocardiography and preventive cardiology. 

Inside Pediatrics, Neonatology

Generous Donation to NeuroNICU B.R.A.I.N. Program Helps Reduce Risk of Brain Injury in Premature Infants

NICU_WEB

Through a generous donation by Robert and Kathleen Israel, Children’s of Alabama is now home to new technology that helps dramatically prevent brain injury and improve brain development and function in its sickest patients.

Children’s of Alabama is thrilled to announce a very generous gift of a cutting-edge technology designed to help reduce the risk of brain injury in preterm infants. The gift was donated by Robert and Kathleen Israel in honor of the care their daughter, Ivy, received in the Neonatal Intensive Care Unit (NICU) in 2018. Ivy is home and doing very well. “The NICU team at Children’s of Alabama saved our daughter’s life,” said Robert Israel, “and we are forever grateful.”

“This new technology made possible by the Israel family is helping us  dramatically prevent brain injury and improve brain development and function in our sickest patients,” said Manimaran Ramani, M.D., director of the NeuroNICU program.

Preterm infants born at 30 weeks or earlier are at higher risk for developing intraventricular hemorrhage (IVH), which is associated with long-term neurocognitive and motor deficits. The risk for neurocognitive and motor deficits is also higher for term infants with hypoxic-ischemic encephalopathy (HIE), seizures, metabolic disorders, or stroke, and those undergoing ECMO therapy.

However, a multidisciplinary initiative in the NICU at Children’s of Alabama and the University of Alabama at Birmingham (UAB) called NeuroNICU B.R.A.I.N. (Brain Rescue and Avoidance of Injury in Neonates) aims to prevent and reduce neurocognitive and motor deficits in high-risk neonates.  

The objective of the B.R.A.I.N. program is to identify and prevent brain injury early in high-risk neonates through state-of-the-art diagnostic techniques and neuroprotective care. An interdisciplinary team of medical professionals meets every week to strategize individualized comprehensive neuroprotective plans for infants enrolled in B.R.A.I.N.

Though standard vital monitoring techniques used in NICUs such as blood pressure, heart rate and pulse oximetry provide valuable information about the infant’s hemodynamic status, such standard monitoring techniques don’t provide real-time information regarding the brain’s oxygenation saturation, oxygenation extraction and perfusion status of a sick neonate.

This is where infrared spectroscopy (NIRS) monitoring comes in. “This technology allows us to monitor cerebral oxygenation in very sick infants,” Ramani said. It is a non-invasive method that can be used continually at the bedside as well as during surgery to monitor the health of the brain. It can also be combined with amplitude-integrated electroencephalography (aEEG) to monitor cerebral electrical activity and to diagnose seizures in sick neonates in real-time.

“With the two NIRS devices donated by the Israel family, we are now able to monitor the brain health and adjust our therapies and strategies in real-time on our patients,” Ramani said.

 

 

Cardiology, Inside Pediatrics

Children’s of Alabama Receives Prestigious Accreditation from Children’s Cardiomyopathy Foundation

Cardiomyopathy_WEB

Livie Wheeler of Pell City, Alabama was diagnosed with dilated cardiomyopathy and underwent a successful heart transplant at Children’s of Alabama. Livie was discharged home just in time for her second birthday.

Children’s of Alabama was recently named an accredited center of care by the Children’s Cardiomyopathy Foundation (CCF), a national nonprofit committed to improving the health outcomes and quality of life for children with cardiomyopathy.

“We’re glad to be able to participate,” said F. Bennett Pearce, M.D., outgoing medical director of the Pediatric Advanced Heart Failure and Transplant Program at Children’s of Alabama. “CCF promotes education and helps families connect and choose centers with experience in these kinds of patients.”

The Pediatric and Congenital Heart Center of Alabama at Children’s of Alabama is one of the largest pediatric cardiovascular programs in the Southeast. In 2018, its team of 250 dedicated professionals treated more than 230 patients with pediatric cardiomyopathy. The team includes surgeons, intensivists, cardiologists and many others, including nurses, social workers, child life specialists, genetic counselors, nutritionists, occupational and physical therapists, and chaplains.

“We have traditionally had very strong clinical abilities and success with treating a variety of these conditions,” Pearce said. “Over the 25 years that I’ve worked in the program, I feel we have been among the finest centers, but we have not been quite so active in getting the word out. That needs to change because we want to make families aware that there’s a good resource for them here.”

The CCF offers a plethora of educational and supportive programs for families, as well as a research grant program for basic, clinical, population/epidemiologic, or translational studies focused on primary pediatric cardiomyopathy.

Its accreditation program was established in 2017 to recognize excellence in diagnosing and treating pediatric cardiomyopathy and provide families with standardized center information to help them find an expert treatment center in their area. To date, 39 centers in the U.S. and Canada, including Children’s of Alabama, have been accredited.

The CCF has very strict criteria for accreditation. Centers must:

  • Manage 30 or more cardiomyopathy patients up to age 18 annually or 60 pediatric cardiomyopathy patient visits a year.
  • Have at least one pediatric cardiologist who treats patients with dilated, hypertrophic, restrictive arrhythmogenic and right ventricular or left ventricular non-compaction cardiomyopathy.
  • Be part of a teaching hospital affiliated with a medical school.
  • Offer the following:
    • Prenatal or fetal echocardiography
    • High quality imaging (echocardiogram, cardiac magnetic resonance imaging)
    • Interventional cardiology (catheterization, endomyocardial biopsy)
    • Pediatric cardiac electrophysiology
    • Cardiac surgical services (septal myectomy, cardiac device implantation)
    • Genetic testing and counseling
    • Pediatric neurology
    • Social work
    • Child life services
  • Centers must also have at least one of the following (Children’s of Alabama meets all four):
    • A specialized clinic or program focused on pediatric cardiomyopathy or familial hypertrophic cardiomyopathy with a dedicated team of professionals.
    • Involvement with the North American Pediatric Cardiomyopathy Registry, Pediatric Cardiomyopathy Repository or Pediatric Heart Transplant Study Group.
    • Engagement in pediatric cardiomyopathy research.
    • Advanced heart failure management and transplantation.

“We have everything needed to offer to this group of patients,” Pearce said. “And we want to make sure that when a family confronts this difficult diagnosis, they can easily find our program and be assured that it is a good resource.”

 

Inside Pediatrics, Neurology & Neurosurgery

Children’s of Alabama Clinicians Bring Expertise and Training to Vietnam

Global Surgery NEW_WEB

Children’s of Alabama physicians review a brain scan at a hospital in Vietnam. Neurosurgeons, neurologists and other medical staff travel to Vietnam at least once a year to provide lectures and hands-on training at hospitals in Hanoi and Ho Chi Minh City as part of Children’s of Alabama’s Global Surgery Program.

Surgical interventions to reduce the burden of drug-resistant epilepsy in children have become an integral part of the field in the past 20 years. In low- or middle-income countries like Vietnam, however, it typically remains a vision, not a reality. Vietnam, for instance, has just two adult and two pediatric neurosurgery training programs for a country of 95 million people, and just four pediatric neurosurgeons serving a population of more than 50 million in the northern part of the country.

Enter Children’s of Alabama’s Global Surgery Program, which is designed to form strong, collaborative relationships with large pediatric hospitals in low- and middle-income countries and provide subspecialty fellowship training at Children’s. The hospital’s relationship with Vietnam began in 2013, with an initial visit to neurosurgeons in Ho Chi Minh City. Since then, a team from Children’s, including pediatric neurosurgeon Brandon Rocque, M.D., MS, FAANS, Pediatric Epilepsy Surgery Director Pongkiat Kankirawatana, M.D., Clinical Neurophysiology and Pediatric Epilepsy Program Director Monisha Goyal, M.D., and Director of Neuromonitoring Trei King, R.EEG.T, C.N.I.M., among others, has traveled the nearly 9,000 miles to Vietnam at least once a year to provide lectures and hands-on training at hospitals in Hanoi and Ho Chi Minh City. Their efforts have helped create premier epilepsy programs that draw children from throughout southeast Asia.

“We started with the corpus callosotomy,” Rocque said, a procedure performed on children with generalized epilepsy prone to drop attacks. It involves splitting the main connection pathway between the two cerebral hemispheres to prevent the attacks. The Vietnamese team, led by a neurosurgeon who specialized in brain tumors, performed two such surgeries with the Children’s of Alabama neurosurgeons, then went on to complete 10 themselves over the next six months, all with good long-term results.

Epilepsy surgery is not possible without advanced EEG monitoring, which is where King came in. His job was to teach EEG technologists how to use an EEG in the operating room, including electrode placements, and the most appropriate test for the child’s condition. “We started with the basics and now we’re going much deeper,” he said.

“The people there are extremely hard working and very, very smart,” King said. “They just didn’t have the opportunity and education. The training with our staff allows them to see the entire gamut of what we do in the field and, hopefully, grow to do what we do.”

The Children’s of Alabama team usually spends a week in each city, giving lectures and assisting with the more complex surgeries. “We’re not trying to hammer out a bunch of cases,” Rocque stressed. “The model is not missionary surgery; it’s teaching and working on the patients they asked us to assist with in order to reach a goal of improving specific techniques for the neurologists and surgeons.”

In addition to building the team’s skills in epilepsy surgery, the team hopes to improve how pediatric neurosurgeons are trained in Vietnam, Rocque said. Currently, residents are trained in neurosurgery but don’t receive any formal pediatric training. “There is a really big opportunity to improve the way pediatric neurosurgery is taught in this region,” Rocque said. To help in that goal, Vietnamese physicians and EEG nurses now come to Alabama for several months for focused training on various procedures.

The partnership has continued to grow, with the Vietnamese doctors sending PowerPoint presentations on difficult cases for discussion at Children’s of Alabama’s weekly multidisciplinary meeting, during which the neurology team develops treatment plans. Now the team also discusses the Vietnamese patients. “When we started, we often had to ask for more information and make some changes to the treatment plan,” Rocque said. “But over the last year, their own recommendations have been spot on.”

The experience has been eye opening for the Children’s of Alabama clinicians. “I found a pediatric neurology and neurosurgery program making a valiant effort in diagnosing and treating one child after another with minimal resources,” said Goyal, who visited City Children’s Hospital in Ho Chi Minh City. The children slept on cots that spilled out into the adjacent roofed but open courtyards and hallways, she said. “There were no fans and in September temperatures in Ho Chi Minh were far from balmy.” She was also struck by the fact that the government does not allow the use of benzodiazepines, one of the most common medications used to control seizures in the U.S.

However, Goyal said, “the small number of clinicians do an admirable job with limited resources. They learn from textbooks, not from mentors, even though they have much fewer technical and pharmacological resources.”

“As a physician, this has been a very rewarding experience,” Goyal said. She, Rocque and King are planning another trip this spring to Ho Chi Minh City to continue helping the hospital develop of its own pediatric surgical epilepsy program.

King echoed Goyal’s comments. “It’s been one of the most rewarding things I’ve experienced in my career,” he said. “You see the big difference you make not only in the training, but in the impact on the patients receiving care that they would not get unless we’re there.”

“The patients and families are so appreciative,” King said. “I’ve never experienced that level of appreciation before. I think a lot of it has to do with realizing that without the partnership and collaboration we wouldn’t be able to do the surgeries.”

For instance, he recalls one family whose child was operated on returning to the hospital a year later with a picture of the child to express their thanks. “Those are the things they make this so rewarding,” he said. “When we see the difference it makes in the life of the patients and families and the joy that continues long after the surgery.”