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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.”

Cardiology, Inside Pediatrics, Nephrology

Children’s of Alabama Leads Consortium Dedicated to Improving Outcomes in Cardiac Surgery-Acute Kidney Injury

NEPHRON_WEB

Children’s of Alabama is one of 22 hospitals in the U.S. that is a member of the Neonatal and Pediatric Heart and Renal Outcomes Network (NEPHRON).

Neonatal acute kidney injury (AKI) occurs in 52 to 64 percent of patients undergoing cardiac surgery (CS) and is associated with increased morbidity and mortality.

However, because CS-AKI rates vary widely between centers, it appears that interventions to prevent or mitigate the condition could reduce the overall rate.

Yet, noted Santiago Borasino, M.D., medical director of Children’s of Alabama’s Cardiovascular Intensive Care Unit (CVICU), “there are critical gaps in our understanding as to how to best define CS-AKI, who is at risk, and which patients could best benefit from interventions to prevent or  mitigate the effects of CS-AKI.”

To improve understanding of CS-AKI in this population, Borasino is one of the leaders of the Neonatal and Pediatric Heart and Renal Outcomes Network (NEPHRON), composed of 22 children’s hospitals around the country. The consortium’s goals are to describe neonatal kidney injury epidemiology, evaluate variability in diagnosis and management, identify risk factors, investigate the impact of fluid overload and explore associations with outcomes. It involves multidisciplinary teams including clinicians from cardiac critical care, cardiology, nephrology, and cardiac surgery.

“NEPHRON is providing multicenter data on CS-AKI for the first time,” Borasino said. “The large size of the cohort will enable us to look at details that are not possible with single-center studies.”

NEPHRON published its preliminary results in April 2019, reporting an overall incidence of 54 percent among 2,240 patients in its database.[1] In November 2019, NEPHRON presented additional results during the American Heart Association’s annual meeting, showing a threefold variation in rates among centers, from 27 percent to 86 percent, with significant variations in KDIGO stage (adult AKI definition) to identify AKI (65 percent by oligo oligo-anuria versus 35 percent by creatinine).

The results also showed that the use of cardiopulmonary bypass, but not time spent on bypass, increased the odds of CS-AKI, and that only KDIGO Stage 3 was associated with mortality. There was no impact of CS-AKI on the duration of mechanical ventilation or hospital length of stay.[2]

“NEPHRON preliminary results highlight the limitations of the KDIGO definition and the need to better understand CS-AKI as it occurs with incredible variability among centers, opening the door for future quality improvement intervention,” Borasino said.

The next step is to develop an algorithm to predict which patients are more likely to develop AKI so physicians can intervene earlier. “Early recognition and proper management of AKI are at the forefront of critical care medicine,” said Children’s of Alabama pediatric nephrologist Tennille Webb, M.D. “However, most pediatric hospitals that perform cardiac surgeries do not have protocols in place for managing severe AKI post-operatively.” Webb is now working on developing a clinical pathway to identify patients at increased risk of AKI based on specific patient characteristics. “An advantage to developing this algorithm in the CVICU is that we are able to determine the exact timing and etiology of AKI development in individuals undergoing cardiopulmonary bypass,” she said. “If we can proactively identify risk factors that place these individuals at increased risk for AKI, we can provide earlier intervention, such as early initiation of renal replacement therapy, in an effort to mitigate some of the known severe consequences of AKI.”

“The work that we are doing is very important because we know that AKI post-cardiac surgery leads to worse outcomes and is associated with chronic kidney disease,” Webb said. “It’s great, and yet rare in other institutions, that we have been able to develop a strong relationship between the CVICU and nephrology to work as a cohesive team early AKI detection and prevention.”


[1] Gist KM, Blinder JJ, Bailly D, Neonatal and Paediatric Heart and Renal Outcomes Network: design of a multi-centre retrospective cohort study. Cardiol Young. 2019;29(4):511-518.

[2] Alten J, Cooper DS, Gist KM, et al. , Abstract 13177: Epidemiology of Neonatal Cardiac Surgery Induced Acute Kidney Injury From the Neonatal and Pediatric Heart and Renal Outcomes Network. Circulation. 2019;140(Suppl1).

 

Cardiology

Thanks to Team-Oriented Approach, Heart Transplant Program Leads Country in Outcomes

transplant_team

The Pediatric Advanced Heart Failure and Transplant Team at Children’s Alabama, seated, left to right: Sally Smith, DNP, CRNP, CCTC; Meloneysa Hubbard, MSN, CRNP, CCTC; and Kimberly Sullivan, MSN, CCTC, CRNP. Standing, left to right: Mariah Strickland, MSN, CRNP; Waldemar F. Carlo, M.D.; David C. Mauchley, M.D.; F. Bennett Pearce, M.D; and Robert J. Dabal, M.D.

The numbers tell the story of the heart transplant program at Children’s of Alabama.

• 176 pediatric heart transplants since 1981
• 59 transplants since 2012
• Zero deaths since 2014
• A 97 percent one-year survival rate over the last decade — considerably higher than the national rate of 90.2 percent

One major reason? “We have a very cohesive, experienced, stable team,” said Medical Director F. Bennett Pearce, M.D. That team includes surgical director Robert J. Dabal, M.D., pediatric cardiologist Waldemar F. Carlo, M.D., and pediatric surgeon David C. Mauchley, M.D., as well as four cardiac nurse practitioners, three of whom are certified clinical transplant coordinators.

Until 2012, the pediatric transplant program was housed at the University of Alabama at Birmingham (UAB). But with the opening of the new children’s hospital that year, the transplant team was able to create a separate entity and move into a state-of-the-art cardiac care facility at Children’s. Today, it serves as a regional referral center and is the only pediatric heart transplant program in the state. The program also provides comprehensive care for patients with advanced heart failure using evidence-based medical management and mechanical circulatory support. Its surgeons also perform heart transplants, including ABO incompatible transplants, in infants.

Although the United Network of Organ Sharing (UNOS) considers the Children’s program to be a relatively young program, Pearce said, “the reality is far different” given the team’s depth and length of experience. The team is also diverse, he said, bringing different viewpoints and interests, which expands the program’s potential.

Moving to Children’s brought several advantages, he said, particularly access to pediatric specialists. “We can provide better multidisciplinary care for patients,” he said. The program also now has its own administrative structure and identity, providing families with a central place to call with questions or concerns.

The center also features dedicated social workers, child life therapists, physical/occupational therapists, dietary counselors, psychosocial counselors, specialty pharmacists and pastoral care. “We realize that when a patient is listed for transplant that you’re entering into a relationship the family as well as the patient,” Pearce said, “and we do all we can to optimize that relationship.”

Research is a major part of the program, he said, with ongoing studies on cardiomyopathy, pulmonary hypertension and heart transplantation. For instance, one major study is evaluating alternative immune suppression techniques for post-transplant children. The center also participates in numerous quality initiatives with other transplant programs around the country in order to identify best practices.

Largest Pediatric Heart Transplant Registry in the World

UAB houses the international Pediatric Heart Transplant Society, which maintains the largest registry in the world on heart transplantation. Data from the registry is used to encourage and stimulate basic and clinical research in the field of pediatric heart transplantation and to promote new therapeutic strategies. Since its founding in 1993, data from the registry has been used to produce more than 100 abstracts and presentations, and 87 publications. Today, 56 centers participate in the registry, which contains information on more than 6,542 transplants. James Kirklin, M.D., who was surgical director of Adult and Pediatric Heart Transplant program at UAB and Children’s until his retirement from clinical work in 2017, initiated the registry.

Cardiology Heart Transplant Chart

The Heart of It All
Visit www.childrensal.org/advanced-heart-failure-and-transplant to learn more about the Pediatric Advanced Heart Failure and Transplant team at Children’s of Alabama.

Neonatology

Joined at the Hip

Neonatology_Hip

The sky bridges connecting the University of Alabama at Birmingham (UAB) Women & Infants Center and Children’s of Alabama provide more than a means of travel from point A to B. For the UAB/Children’s Division of Neonatology, the sky bridges not only facilitate seamless clinical care, but also seamless research collaborations.

“It’s a tremendous benefit,” said Trent Tipple, M.D., UAB associate professor of pediatrics, director of neonatology faculty development and co-director of the Neonatal-Perinatal Medicine Fellowship Training Program. “The integration is one that just makes sense. It eliminates a lot of barriers that can make research frustrating and allows one to focus on designing the best study with the necessary personnel; to really think about how to execute a study rather than whether a study can be done.”

“It’s one of the unique features here. UAB’s Regional Neonatal Intensive Care Unit and Children’s NICU are literally joined at the hip,” said Namasivayam Ambalavanan, M.D., UAB professor of pediatrics, neonatology division co-director, director of the Translational Research in Normal & Disordered Development (TReNDD) Program at UAB and principal investigator of the UAB Research Center. “This makes clinical care a lot better and research also improves.”

Carl “Tim” Coghill, M.D., UAB professor of pediatrics and medical director of Children’s NICU, said the physical proximity not only serves as a benefit to clinicians and researchers, but also patient families facing what can be a stressful experience.

“Many freestanding children’s hospitals are blocks away from their associated delivery units, making it difficult for consultants to see the infants without transfer away from the mother,” Coghill said. “Children’s of Alabama used to be two blocks from UAB with no connecting bridge. With the present bridge, the closest NICU bed at UAB is only 75 feet from the nearest NICU bed at Children’s, which is closer than some beds are to each other in other respective units.”

Coghill continued, “The ability to stay with a nursing staff that you know and a hospital that you are familiar with while continuing to get the best care is a confidence builder, and delivering great care is only good enough if it is perceived to be great care by the patients and families as well.”

As a founding member of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Neonatal Research Network (NRN), part of the National Institutes of Health (NIH), UAB/Children’s is consistently one of the top centers in developing, leading, enrolling and analyzing randomized controlled trials and clinical studies. For example, neonatology division members have led three major innovative NRN studies – the SAVE Factorial Trial, the Cytokine Study and the SUPPORT Factorial Trial. A fourth trial led by UAB/Children’s neonatologists testing the effects of caffeine late in the neonatal course and at home to shorten hospitalization and decrease apparent life threatening events began enrollment this year.

In its more than 30 years of existence, the NRN has defined the standards of multi-institutional collaborative research resulting in increased survival and decreased morbidity rates of extremely low birth weight infants and other critically ill infants in the U.S. Wally Carlo, M.D., Edwin M. Dixon Endowed Chair in Neonatology and neonatology division co-director, and Ambalavanan are principal investigators for the NRN and have led nationwide studies on ventilator care, antenatal steroids, chronic lung disease and neurodevelopment outcomes. A study in the NRN published in the New England Journal of Medicine reported that neonatal mortality has been decreased over the last 10 years, including decreases in almost all specific causes of neonatal mortality, because of improvements in care implemented in the NRN centers.

In addition, UAB/Children’s is the only facility in the U.S. to be awarded grants in all three perinatal networks from the NICHD – the NRN, the Maternal-Fetal Medicine Units Network and the Global Network for Women’s and Children’s Health Research. For more than two decades, these networks have awarded UAB/Children’s more than $20 million to fund research for pregnant women and babies. The most recent grants, awarded in 2016, will bring a total $1.1 million per year through 2021.

Under the Global Network, UAB/Children’s researchers have led seminal investigations of resuscitation and essential newborn care in 100 communities in six countries, which included almost 200,000 infants. These trials established the effectiveness of these interventions in reducing stillbirths and neonatal mortality, and led to worldwide implementation of training, including the globally-implemented Helping Babies Breathe Program and the Essential Care for Every Baby Program launched in 2014. The programs have been introduced in more than 75 countries to save babies’ lives at birth, with the potential to reduce infant deaths soon after birth by 1 million.

“It should save a million lives every single year at almost no cost,” Carlo said of the programs. “It will save the most lives in the world.”

Division of Neonatology
Learn more about the Division of Neonatology, including specialty clinics and faculty bios, at https://www.childrensal.org/neonatology.

Neonatology

STEPP-IN Initiative Improves Outcomes in Neonatal Surgical Patients

Neonatology_STEPP-IN

Newborns admitted to neonatal intensive care units (NICU) in freestanding children’s hospitals like Children’s of Alabama are typically sicker with much greater complications than those admitted to NICUs in delivery hospitals. Indeed, “All our patients are referred because of some type of complication that can’t be cared for at a delivery facility,” said NICU Associate Medical Director Allison Black, M.D. Most, she said, will require surgical procedures and/or care from pediatric subspecialists.

Thus, developing policies and procedures to improve the overall care and outcomes for these patients is paramount. One of the best ways to do that, research shows, is through a quality improvement approach, in which collaborative teams review current procedures, identify gaps, then redesign processes to close the gaps.

Which is exactly what Black and her team did to reduce perioperative stress in their tiny patients. Called the Safe Transitions and Euthermia in the Perioperative Period in Infants and Neonates (STEPP-IN), it is part of the Children’s Hospital Neonatal Consortium (CHNC).

“We know that going to the operating room creates significant physiological stress for these babies,” according to Black, in part because of the handoff between teams. The idea was to promote stability by improving and standardizing the handoff process. “There was a handoff through the charting, but not face-to-face,” she said.

So a multidisciplinary team of clinicians from the NICU, anesthesia and surgery worked together to create protocols and handoff forms to improve scores on the Post-Operative Management Score (POMS), which measures temperature, glucose, pH, pCO2 and intubation status, all of which can indicate infant stress. The score is calculated based on the number of times every parameter is within the target range. The goal is to reach each parameter at least 85 percent of the time.

The revamped protocol used today requires that the primary bedside nurse as well as nurse practitioner and/or neonatologist transport the infant to the pre-operative bay and provide an in-person handoff to the anesthesiologist or certified nurse anesthetist (CRNA), including written documentation of the baby’s status.

That face-to-face communication is important, Black said. “There are some things about the patient’s overall acuity and clinical course that can’t be expressed on paper and is better communicated verbally at the bedside with the patient,” she said. A similar process occurs postoperatively.

The team first tackled temperature. The handoff sheet requires temperature measures at six time points, including before and after transport to and from the operating room, as well as the highest and lowest temperature measurements during the procedure and the OR room temperature. “From this data we were able to pinpoint when our patients were getting cold and could work to address problems, such as providing education about thermoregulation in the OR as well as during transport,” Black said. Since implementing the new procedures, 90 percent or more of surgical patients have had postoperative temperatures within the accepted range.

Soon after Children’s began collecting data on the initiative, it received the CHNC Continuous Quality Improvement Initiative Golden Collaborative Award. In October, it also received a CHNC award for its work on improving euthermia in the postoperative process through the handoff procedure.

The team is now working to improve other POMS parameters. For instance, it found that it was only collecting full POMS data on about 10 to 20 percent of its postsurgical patients. So it developed a protocol and educated NICU and bedside nurses to obtain postoperative glucose as well as blood gases within one hour of the patient’s return to the NICU from the OR.

“Now that we’re collecting the data, we can take a hard look at where we could improve,” Black said. The team now evaluates the data every month and works to identify and address any problems.

“Looking at the parameters and understanding how they reflect the stability of the patient and how we can improve them in the postoperative period is improving the overall care,” she said.

Neonatology Clinics
Learn about some specialized neonatology services at Children’s of Alabama.

Cardiology

Kylin’s Brave Heart

kylin_heart

Hearts are full at Children’s of Alabama because Kylin Harris’ heart is well. Inside a hospital conference room in June 2018, the banner was hung, the tablecloth was draped and the cake was cut in celebration of Kylin, the first-ever patient at Children’s to be successfully weaned from a pediatric ventricular assist device without the need for a heart transplant. The 1-year-old guest of honor arrived in what is by far Children’s most popular mode of transportation – a red Radio Flyer wagon – a stark contrast from her arrival just four months prior.

Kylin was flown by helicopter to Children’s after her mother, Keianna Harris, came home to find her daughter uncharacteristically lethargic. Kylin hadn’t slept well the past two nights and a startled Harris, a nurse by trade, took Kylin to their local emergency room. While en route to the hospital, Kylin had a seizure and fell limp.  Doctors at Children’s intubated Kylin and later diagnosed her with advanced heart failure due to myocarditis. Kylin experienced cardiac arrest while being transferred to the Cardiovascular Intensive Care Unit. Doctors performed chest compressions and CPR, and placed her on extracorporeal membrane oxygenation therapy (ECMO), which pumps and oxygenates a patient’s blood outside the body allowing the heart and lungs to rest for a limited time.

The Pediatric Advanced Heart Failure and Transplant Team at Children’s discussed every detail of Kylin’s care with Harris. It was apparent ECMO would not provide long enough support for Kylin’s heart. First, doctors would convert Kylin from ECMO to the Berlin Heart® EXCOR, a long-term cardiac assist device that functions as a heart outside of the body. The Berlin Heart acts as a bridge to transplantation for children in heart failure, allowing the patient mobility and freedom to rehabilitate in preparation for transplant surgery. Available in several sizes, the Berlin Heart is not totally implanted inside the body. Doctors insert cannulas, or flexible tubes, in the heart and they extend through the skin and connect to a small pump located outside the body. That pump, along with its computerized drive unit, maintains blood flow.

“It was a lot to take in … It all happened so fast,” Harris said. “My biggest fear was losing her. It was scary not knowing whether she was going to make it through.”

The Pediatric Advanced Heart Failure and Transplant Team, a partnership between Children’s and the University of Alabama at Birmingham (UAB),  is among the first in the U.S. to use the Berlin Heart in children and reported the first successful Berlin Heart bridge to transplantation for a child with a single ventricle. Children’s and UAB first used the device in 2005, when UAB was home to the pediatric cardiac unit. The following year, the team weaned its first patient, now an adult, from the Berlin Heart without the need for transplant at UAB. In 2012, with the opening of the Benjamin Russell Hospital for Children and Bruno Pediatric Cardiac Unit, all pediatric cardiac care to relocated to Children’s.

The team’s success with the Berlin Heart led to a landmark study published in the New England Journal of Medicine in 2012 featuring two team members as co-authors – pediatric cardiologist F. Bennett Pearce, M.D., and David Naftel, Ph.D, professor in the UAB Division of Cardiothoracic Surgery. The research team, known as the Berlin Heart Study Investigators, evaluated ECMO and the Berlin Heart to see which offered children the best chance of survival until they could receive a new heart or recover enough heart function not to need a support device or transplant.

Pearce says 46 percent of children diagnosed with heart failure die or receive a heart transplant within the first five years after diagnosis. A heart transplant is a child’s best hope of survival, with the survival rate after a transplant estimated at 83 percent at three years. However, with limited donor hearts available, the wait is often long.

“Children on waiting lists for heart transplants experience the highest waiting-list mortality for any age or organ,” Pearce says. “This research demonstrates that the Berlin Heart, available in variety of appropriate sizes for children, has the potential to effectively and safely bridge children from diagnosis to transplantation or in some cases recovery, for long periods of time.”

Before the study and subsequent approval of the Berlin Heart by the U.S. Food and Drug Administration, ECMO was the mainstay for mechanical circulatory support as a bridge to transplantation. The effective period of support with ECMO is typically limited to 10 to 20 days before serious complications such as bleeding and major organ system failure, often prohibiting transplantation. The short duration of support afforded by ECMO is often inadequate, the study reads, citing only 40 to 60 percent of children requiring support with ECMO survive long enough to undergo heart transplantation. Researchers found that the longest duration of support for the younger, smaller children was 174 days for the Berlin Heart and 21 days for ECMO therapy. The longest duration of support for the larger, older children was 192 days for the Berlin Heart and 28 days for ECMO.

“The Berlin Heart provided better survival over longer support periods than ECMO therapy,” Pearce says. “These longer support periods on the Berlin Heart allow for patient rehabilitation, improved nutrition and weaning from ventilator support to use of the patient’s own respiratory system so that the children may be better candidates for successful transplantation or so that long-term cardiac recovery can occur.”

Kylin lived with the Berlin Heart for 83 days. In that time span, doctors noted signs of cardiac recovery and further testing gave doctors the green light to again operate on Kylin to remove the device. Pearce credits fellow pediatric cardiologist Waldemar F. Carlo, M.D., who was the first to see hints of Kylin’s recovery.

“He was the strongest advocate for us to explore whether her degree of recovery was enough for her to be off the device,” said Pearce, adding Kylin’s echocardiogram and catheterization data yielded positive results. “We followed the protocol of the Berlin Heart Clinical Support Team. We were in daily communication with the team from the moment we considered weaning her off.

“She has continued to show us normal cardiac function. We removed her from the transplant list because she had improved so much. We’re following her closely, but our hope is she won’t require a heart transplant,” Pearce said.

And much to Harris’ delight and relief, her baby girl did make it through. Kylin is her old self again, she says, smiling from ear to ear.

“When Kylin was in the hospital, she wouldn’t smile. She felt miserable,” Harris said. “But now her personality is back. She’s been grinning ever since we left.”

Joseph S. Bruno Pediatric Heart Center
Learn more about the services provided by the Bruno Pediatric Heart Center at Children’s of Alabama at https://www.childrensal.org/heart-inpatient-services.