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pediatrics

Cardiology, Inside Pediatrics

Discharged with an iPad: Children’s of Alabama Uses Telehealth to Monitor Complex Heart Patients at Home

Telehealth_WEB

Children’s of Alabama has partnered with Locus Health to provide a special iPad app that connects parents with nurse practitioners who treat infants who have undergone complex surgery.

Babies born with a single ventricle must undergo three major open-heart surgeries by the time they are toddlers. The first and most complex surgery occurs at 1 to 2 weeks; the second between 4 and 12 months. The months spent at home between the two can be overwhelming for parents.

Now families served at Children’s of Alabama have a new tool to help them cope – an iPad containing a special app from Locus Health, a Charlottesville, Virginia-based company that develops software to ease the discharge process and transition from hospital to home. The app forms the core of a remote monitoring system that connects parents with the nurse practitioners at Children’s of Alabama who care for their infants.

“These parents have been through a tremendous amount of stress,” said Katelyn Staley, discharge coordinator for Cardiovascular Services at Children’s of Alabama. “Not only do they have a newborn, but the baby requires major open-heart surgery in that first week or two of life. Then they are discharged home; it’s an overwhelming process,” she said.

“The Locus platform was designed specifically for the pediatric patient population with congenital heart disease,” said Sarah Blair, RN, MSN, CRNP, of Children’s of Alabama’s Hearts at Home Program. More than a dozen of the country’s leading children’s hospitals now use the system, which studies find can reduce post-discharge emergency room visits as much as 40 percent and the total hospital days by up to two weeks.

Children’s of Alabama had been using another electronic program, but it was cumbersome, not user-friendly and difficult to extract data from. Before that, all data was collected the old-fashioned way – with paper and pencil.

With the Locus app, parents enter their child’s daily weight, oxygen saturation, heart rate, number of diapers, Synagis dosing and nutritional intake, noting if there is any vomiting or diarrhea. They can also upload photos and videos.

Timely information is critical. For instance, weight gain is vitally important because if the baby stops gaining or loses weight the team needs to intervene quickly before complications occur. In addition, values can be individualized for each infant depending on their medical status. “If a parent enters an out-of-range value it creates a red flag and prompts the caregiver to call the hospital immediately,” Staley said.

The data automatically populates the congenital heart clinical dashboard, which nurse practitioners and clinical nutritionists monitor. Parents can also see current and past data and even track trends across time, Blair said. Data can also be downloaded into a PDF and emailed to physicians.

The remote monitoring is also beneficial since many patients live hours from the hospital and may be followed by a local cardiologist. “Now we can share the information with the cardiologist where they live,” she said.

“It definitely keeps us in constant communication with the families,” Blair said. “We still call and talk to them, but it relieves some of that pressure.”

“Sending families home with the reassurance that nurse practitioners are logging into the system on a daily basis and that they have 24/7 access to a provider is very reassuring,” Staley said.

Nephrology

Cutting Out Sugar Intake, One Kid at a Time

The average American consumes almost 152 pounds of sugar a year, about three pounds a week or 42.5 teaspoons a day — more than triple the recommended amount.[1] While sugar consumption isn’t the only cause of the country’s obesity epidemic, it is definitely a major contributing factor — particularly in children. And the problem is not only obesity, says pediatric nephrologist Daniel I. Feig, M.D., Ph.D., who directs the University of Alabama at Birmingham (UAB) Division of Pediatric Nephrology at Children’s of Alabama, but all the downstream health effects of being overweight, including cardiovascular disease, hypertension, liver disease, kidney disease and type 2 diabetes.

One reason for the high sugar intake is economic. Over the past 35 years, the price of fruits and vegetables has tripled, he said, while the price of sugar-sweetened foods such as beverages fell 75%. “The availability of calories and nourishment in a low-sugar fashion is much more expensive than it was a few decades ago,” he said. “We can talk until we’re blue in the face in low-income, urban clinics about eating fruits and veggies, but that isn’t the only barrier to kids not eating them; their families can’t afford it.

Then there’s the issue of high-fructose corn syrup (HFCS), used as a sweetener and preservative in many foods. Research from Feig and others has found that HFCS is not simply sugar in another form but has a high relative fraction of fructose compared to glucose, which alters cellular carbohydrate metabolism. This results in a greater rise in triglycerides and uric acid than with sugar from sugar cane or sugar beets.

Researchers have also demonstrated that high levels of uric acid stiffen and thicken blood vessel walls, resulting in hypertension, as well as activating the renin-angiotensin system system, causing immediate vasoconstriction.

Clinical trials find that lowering uric acid levels in hypertensive adolescents, but not adults, improves blood pressure. “So we have a window of opportunity in children to reduce their long-term cardiovascular and renal risk factors by controlling sugar intake,” Feig said.

That’s why clinicians and nutritionists at the hypertension clinic at Children’s counsel patients and their families about the effects of sugar as well as where the sugar is found (i.e., the sweet tea that is ubiquitous throughout the South). “Adolescents get about 48% of their sugar from sugar-sweetened beverages,” Feig said, “so it isn’t a function of just telling them not to eat candy.”

“When I see a child in our hypertension clinic with obesity-related hypertension, about a third of the time very high sugar and caloric intake in their beverages, up to 2,000 calories a day, is a major contributing factor,” he said. “Simply eliminating those liquids could make a huge difference in their health.”

He cites a recent study that polled new parents about the sugar content of various foods. More than 80% of parents underestimated the sugar content of foods with a “health halo,” like fruit juice and yogurt. “We have an educational deficit in terms of dietary literacy,” he said.

“So a big push in our clinic is helping families learn more about the nutritional content of food.”

Blood Pressure Control

Learn more about the hypertension clinic at Children’s of Alabama.


[1] Department of Health and Human Services. How Much Sugar Do You Eat? You May Be Surprised! https://www.dhhs.nh.gov/dphs/nhp/documents/sugar.pdf.

Cardiology, Uncategorized

Understanding Xenotransplantation’s Potential to Save Babies

The issue is simple: there are simply not enough hearts for all the children who need them. So 17% of all children who need a heart transplant die while waiting; this translates to 20% to 25% of infants.[1]

The University of Alabama at Birmingham (UAB) and Children’s of Alabama aim to change those dismal statistics with one of the most revolutionary approaches since the first heart was transplanted from one human to another in 1967 – xenotransplantation.  

Thanks to a $19.5 million grant from biotechnology magnate United Therapeutics Corporation, UAB and Children’s have launched one of the top programs in the world dedicated to developing genetically modified solid organs from pig models for transplantation.

The idea isn’t new. Pig tissue has been used to replace heart valves for years, said cardiothoracic surgeon David Cleveland, M.D., MBA, who leads the program at Children’s. The greatest challenge with solid organs, he said, is overcoming immunological and physiological barriers.

If they can do that, “We believe that there’s huge potential to improve the lives of children,” he said.  

Supporting Evidence

Earlier this year, Cleveland presented preliminary results from a study showing little reactivity in an infant’s blood to cells from a triple-knockout (TKO) pig. The pig had been genetically modified to delete the three major antigens that react with natural human anti-pig antibodies. Even those human cells that did react demonstrated a very mild reaction.

“We found that very promising,” Cleveland said.

Another area of interest is producing immune tolerance by transplanting porcine thymus tissue to “re-educate” the immune system to accept the pig heart, said cardiac intensivist Leslie Rhodes, M.D. The idea comes from the fact that children can develop an immune system via a human thymus transplant. “We wonder if we could we train their immune system to be tolerant to the pig thymus transplant,” she said.

Infants are the ideal starting place, Cleveland said, not only because they have the highest wait list mortality of any other demographic waiting for a solid organ transplant, but because their immune systems are still naïve. Indeed, they do not develop antibodies to pig glycans during at least the first three months of life, Cleveland and his team wrote in a recent journal article, providing a “window of opportunity” for the transplant.[2]

The next step is a transplant in a non-human primate. “The FDA won’t even consider it until we can prove consistent survival in a non-human primate,” Rhodes said. They hope to perform their first transplant later this year.

Societal Concerns Addressed

The team is also aware of the societal issues around xenotransplantation. To address that, they surveyed the families of patients on the transplant list and the nurses and physicians who will care for these children.

”I was surprised by how positive they were,” Cleveland said. “I thought there would be more pushback than there was.” Still, he said, “I think there has to be major education,” once xenotransplantation becomes a reality. “The idea of replacing a heart with a pig heart will take some people a little time to get over.”

He’s confident it will happen, though. “UAB is going to be one of the centers in the world with the potential to make this happen,” he said. “We have children living in our ICU because there’s not enough cardiac function; they are having their birthdays here. It totally changes entire families to have a child in the hospital forever. There has to be another way.“


[1] Dipchand AI. Current state of pediatric cardiac transplantation. Ann Cardiothorac Surg. 2018;7(1):31–55. doi:10.21037/acs.2018.01.07

[2] Cleveland D, Adam Banks C, Hara H, Carlo WF, Mauchley DC, Cooper DKC. The Case for Cardiac Xenotransplantation in Neonates: Is Now the Time to Reconsider Xenotransplantation for Hypoplastic Left Heart Syndrome? Pediatr Cardiol. 2019;40(2):437-444.

Cutting-Edge Research

Learn more about various research areas at the University of Alabama at Birmingham.

Neonatology

Initiative Targets Pain Management in NICU Babies

neonatology_pain

Adults and children can tell you when they’re in pain. Infants can’t. Which is why Children’s of Alabama is participating in a national quality improvement initiative called Erase Post-Op Pain designed to reduce pain after invasive procedures. The initiative is part of the Children’s Hospital Neonatal Consortium (CHNC), an international group of children’s hospitals dedicated to improving care in the neonatal intensive care unit (NICU).

“There is really no ‘gold standard’ for pain assessment in preverbal children,” said NICU Associate Medical Director Allison Black, M.D. “Nor is there much data on the best way to treat pain in neonates.” However, there is data showing that preterm  babies who experience repeated pain can develop physiologic instability, altered brain development and abnormal stress response systems that persists into childhood. “The immature brain can potentially have a more diffuse and exaggerated response to pain,” she said.

The Erase initiative is designed to apply a multidisciplinary approach, including physicians, bedside nurses, pharmacologists, and even parents, to implement a standardized method to assess, document and manage postoperative pain.

The first action the team took was to adopt a single objective pain assessment tool, the N-PASS score, which measures sedation and pain based on vital signs such as heart rate and breathing, as well as behavior such as agitation, crying, facial expressions and neurologic resting tone. “These are things parents can help us assess as well,” Black said. Parents will also complete a survey after each procedure about how well they thought their baby’s pain was assessed and controlled.

The NICU pharmacist worked closely with other team members to develop different guidelines and different algorithms of what medications to use for each specific patient. Each guideline is unique, and the algorithm used depends upon the invasiveness of the procedure, whether the patient has had similar drugs in the past and if they are breathing spontaneously or with the help of assisted ventilation.

“By considering the history of the patient, the type of procedure performed. and looking closely at each drug’s  time to onset and duration of action, the treatment should be more effective,” Black said.

The initiative dovetails nicely with another CHNC performance improvement project, the STEPP-IN initiative. STEPP-IN works to reduce perioperative stress and instability  in NICU patients through improved handoffs and communication. “I think the projects will compliment each another and help improve our overall care of these small infants during the high-risk perioperative period,” Black said.

Babies in Need

Learn more about the Neonatal Intensive Care Unit at Children’s of Alabama.

Pulmonology

Secondhand Smoke Exposure in Kids with Cystic Fibrosis May Impact Treatment Efficacy, Researchers Suspect

The introduction of cystic fibrosis transmembrane conductance regulator (CTFR) modulators, which target the basic genetic defect in cystic fibrosis (CF), has revolutionized the treatment of the disease over the past five years. With a new, triple CTFR modulator expected to be approved by the end of 2019, in the next year, 90% of those with CF may benefit from these new drugs. However, studies of currently available modulator therapies find that between 20% to 25% of patients who should respond based on their disease’s genetic fingerprint don’t.[1][2]

Researchers from the University of Alabama at Birmingham (UAB) think they may know why: patients’ exposure to secondhand smoke. Now they have embarked upon a study to test this hypothesis.

While it might seem counterintuitive that families with a child with CF would expose them to secondhand smoke, approximately one-third of pediatric CF patients are exposed to tobacco smoke, half of whom have been around a smoker in the past 3 months.[3] And yet, said Gabriela Oates, Ph.D., assistant professor in the UAB Division of Pediatric Pulmonary and Sleep Medicine at Children’s of Alabama and an associate scientist in the UAB Cystic Fibrosis Research Center, “many think their child isn’t exposed to the smoke if the family member is smoking outside.”

But that’s simply not true.

“We’re not just talking about secondhand smoke but also about thirdhand smoke exposure,” Oates said. Tobacco particulates remain on the hair, skin and clothes of the smoker, even if he or she smokes outside, and are also found on household surfaces. “You can find relatively high level of nicotine metabolites in the urine of kids whose parents smoke out of doors,” she said. In fact, children demonstrate exposure even if their household members do not smoke but they live in multifamily housing that shares a wall with a smoking household.

This all ties into the new CFTR modulators because in-vitro, animal and non-CF studies indicate that “even indirect exposure to tobacco smoke actually blunts the effect of the drug,” she said. So while the CFTR modulators are designed to correct the underlying genetic mutation that causes the disease, “the smoke exposure undermines that.”

Her project will define the consequences of secondhand smoke on CF respiratory decline and CFTR modulator response using both self-reported and objective measures of exposure such as urine biomarkers. Results will underscore the necessity of clinically driven smoking cessation programs for CF families and will inform recommendations for smoke exposure screening and control.

Given that most children exposed to smoke are clustered in the low-income segment of the CF population, this becomes a health equity issue, Oates said. “It’s particularly concerning because the smoke exposure may be outside of the household and there’s nothing the family can do about it,” she said. “I worry that in the era of CFTR modulators we may see an increased gap in CF outcomes between kids living in poorer environments and their advantaged counterparts. This issue needs to be watched carefully.”

Oates also fears that if her hypothesis is supported, payers may institute smoke exposure screening programs and base drug coverage on the results. This creates quite the conundrum for researchers like herself. “As scientists, we have a responsibility to determine why drugs work or don’t work,” she said, “yet we have little control over how the results of our science are used.” If her study does show that smoke exposure limits the benefits of CFTR modulators, she said, “the very first step is major education on several levels, including CF families, clinicians and insurance providers.”

Her team is being proactive in this regard, already holding interviews with current and former smokers who have a family member with CF, as well as with CF clinicians and other stakeholders. The goal is to develop materials to better inform caregivers and clinical providers about the impact of second-hand smoke and to test a smoking cessation intervention tailored to CF families. “You would be amazed that there is not a single U.S. study evaluating smoking cessation programs in the CF community,” Oates said.


[1] Hebestreit H, Sauer-Heilborn A, Fischer R, Kading M, Mainz JG. Effects of ivacaftor on severely ill patients with cystic fibrosis carrying a G551D mutation. J Cyst Fibros. 2013;12(6):599-603.

[2] Taylor-Cousar J, Niknian M, Gilmartin G, Pilewski JM, investigators VX. Effect of ivacaftor in patients with advanced cystic fibrosis and a G551D-CFTR mutation: Safety and efficacy in an expanded access program in the United States. J Cyst Fibros. 2016;15(1):116-122.

[3] Ong T, Schechter M, Yang J, et al. Socioeconomic Status, Smoke Exposure, and Health Outcomes in Young Children With Cystic Fibrosis. Pediatrics. 2017;139(2).

Breathe Easier

Learn more about the Cystic Fibrosis Center at Children’s of Alabama.

Nephrology

Children’s of Alabama Becomes First to Safely Provide Dialysis to Tiny Babies

Didactic and hands-on teaching on the use of CRRT using the Aquadex Pureflow.

Despite the frequent use of dialysis for critically ill children and adults, the procedure has historically been used sparingly in neonatal intensive care units (NICU) because dialysis  machines designed for adults can cause severe complications in babies. That’s no longer the case at Children’s of Alabama.

The problem is that continuous renal replacement therapy in these tiny patients requires at least 100 ml of blood to initiate the therapy. This can be half or even more of the baby’s entire blood volume, said David Askenazi, M.D., MSPH, who directs the Pediatric and Infant Center for Acute Care Nephrology. “Many times, when we started the machine, we had to open the crash cart to resuscitate infants who were coding,” he said.

That changed in 2013, when Askenazi realized that a machine designed to remove fluid and sodium from blood in adults with heart failure — the Aquadex FlexFlow® System — could be repurposed for neonate dialysis.

“If we could adapt a machine that requires one-third of the blood of the traditional machine volume to do what we needed, we knew we could improve our ability to support these babies,” he said. So the team learned as much as they could about the device, developed a safety net of processes to maximize the likelihood of success and convinced the hospital to buy its first machine.

Today, the hospital has fiveAquadex machines and two or three babies are typically receiving dialysis at any one time. “Now we have complete control over their fluids, electrolytes and waste products,” Askenazi said, “while the nurses feel comfortable doing the therapy and the babies don’t even know they’re on it.” Last year, babies in the NICU spent a total of 800 days on dialysis compared to just 30 days in 2013.

“For our babies born with diseased or absent kidneys, Aquadex has given them a chance at life,” said NICU nurse practitioner Kara Short, MSN, CRNP, “because in the past, there were no options to treat these patients.”

The team published the results of its first 12 patients in the journal Pediatric Nephrology in 2016. Since then, they have treated more than 90 patients, the smallest just 1.2 kg (2 pounds, 7 ounces) and taught nephrologists at several other children’s hospitals around the country to use the Aquadex. However, there are still only a handful of hospitals offering the procedure.

“We have shown we can now support these babies safely,” Askenazi said. “The impetus now is on us to make sure the patients who can benefit from this therapy make it to Children’s so we can give them a chance for life.”

And the machine’s manufacturer? It is now pursuing a pediatric indication for Aquadex.

A Team Effort

Learn more about the neonatology program and team at Children’s of Alabama.

Cardiology

Children’s of Alabama CVICU Embraces Quality Improvement Projects

What if you could proactively identify patients who might go into cardiac arrest and intervene before the unthinkable happens? If you do what Children’s of Alabama did, you end up with fewer children having arrests and improved response times because of faster medication administration when an arrest does occur.

That’s all thanks to a multi-institutional quality improvement project — Cardiac Arrest Prevention (CAP) — centered around a resuscitation action plan, which focuses on rescuing patients before they arrest.

The project, led by cardiovascular intensive care unit (CVICU) Medical Director Santiago Borasino, M.D., and cardiac intensivist Hayden Zaccagni, M.D., is part of the Pediatric Cardiac Critical Care Consortium (PC⁴), made up of 52 of the country’s top children’s hospitals. The consortium maintains a focused CVICU registry designed to share real-time data and outcomes between institutions and participates in quality improvement projects to improve outcomes.

The CAP project is just one of the data-driven, collaborative learning initiatives the group has implemented.

Comprehensive Effort

“CAP is a joint effort with bedside nurses, respiratory therapists, administrative nursing staff and trainees, whether fellows or advanced practice practitioners, to not just identify at-risk patients but have a common mind-set and goals to prevent arrests,” Zaccagni said.

Once a patient meets certain criteria putting them at risk for cardiac arrest, the attending intensivist completes a paper report that remains bedside. Clinicians then round separately on these patients and, if warranted, give the bedside nurse the ability to start the treatment plan without waiting for separate orders. Resuscitation medications are kept at the bedside for immediate use if the patient demonstrates any danger signs. “The goal is to expedite interventions to prevent the arrest from occurring,” Zaccagni said.

Borasino, in collaboration with two former Children’s intensivists, Kimberly Jackson, M.D., and Jeffrey Alten, M.D., started the original resuscitation program. “Dr. Alten was our medical director and section chief until 2017 and he was instrumental in starting this project and then taking it to the national stage,” Borasino said, while Jackson coordinated the local effort when it began in 2013. Alten, now at Cincinnati Children’s Hospital Medical Center, is still the coordinating head of the national initiative, while. Jackson has moved to Duke University Medical Center in Durham, North Carolina, where she leads its initiative.

The official PC4 initiative began in October 2018, but Children’s had something similar in place for three years, Zaccagni said. However, because the PC4 initiative includes more than 10,000 patients, there is more data available on best practices. So, for instance, Children’s adjusted the bedside rescue medications so they are easier to deliver.

Although the new initiative had only been in place eight months when this article was written, “anecdotally, I’d say we’ve reduced the number of cardiac arrests,” Borasino said.

More Quality Improvement Initiatives

Two other quality improvement projects are also demonstrating results:

Star Track. Geared towards less-complicated patients who have cardiac surgery, this initiative involves standardizing patient care to remove unnecessary equipment sooner. This improves patient comfort and enables them to transfer soon out of the CVICU. “The patient comfort is our main goal,” Borasino said. “Patients undergoing these types of surgeries are older and don’t require the level of invasive monitoring our unit provides.”

A secondary benefit is patient flow. “We are a busy unit, so this allows us to care for more patients as needed,” Borasino said. In addition, removing devices reduces the risk of infection from invasive equipment like Foley catheters and central lines.   

Alarm reduction. This initiative is geared toward reducing the number of alarms in the unit in an effort to reduce “alarm fatigue” while improving the overall atmosphere. Alarm parameters are reviewed every 12 hours to ensure they are still accurate given the continually changing status of the patient. To date, the number of alarms has dropped by a third. “We’re trying to diminish that even more,” Borasino said. “We’d like all alarms to be meaningful alarms.”

Quality Improvement

Learn more about the cardiovascular intensive care unit at Children’s Alabama.

Neonatology

Baby NINJA: Reducing Acute Kidney Injury One Preemie at a Time

Up to 87% of very low-birthweight infants in the neonatal intensive care unit (NICU) are exposed to at least one nephrotoxic medication during their stay. About 1 in 4 of those experience at least one episode of acute kidney injury (AKI), which can lead to increased length of stay and mortality. [1], [2], [3] There is also evidence that even a single incidence of AKI increases the risk of chronic kidney disease.[4]

To address this problem, in 2015 Children’s of Alabama began the first initiative in the country designed to reduce the use of nephrotoxic medications in the NICU. The initiative, called “Baby NINJA,” was so successful it is now being validated at several other major children’s hospitals.

The effort builds off the NINJA (Nephrotoxic Injury Negated by Just-in-Time Action) project, a joint endeavor between Children’s and the Cincinnati Children’s Hospital Medical Center that started in 2011 in non-critically ill children. The goal was to ensure that children only receive the nephrotoxic medications that they needed for as long as they needed them, and that their kidney function was closely monitored for any signs of AKI.

The NINJA initiative reduced exposure to nephrotoxic medications by 38% and concomitant AKI by 64%.[5] As a result, last year it was added to the Solutions for Patient Safety consortium and instituted at 147 children’s hospitals worldwide.

The Baby NINJA project at Children’s has demonstrated similarly stellar outcomes, noted Christine Stoops, D.O., assistant professor of pediatrics at the University of Alabama at Birmingham (UAB) and the primary investigator on the initiative. In the 18 months after implementing the program, nephrotoxic medication exposure dropped 42% and AKI prevalence fell 78%, she said. Meanwhile, the rate of patients with AKI who had also been exposed to nephrotoxic medications fell 64%, while patients spent 68% fewer days in AKI.

The program’s key players are the two NICU pharmacists, Sadie Stone, PharmD, and Emily Evans, PharmD, who round daily with the multidisciplinary team, which includes  neonatologists and nurse practitioners, to identify at-risk babies, Stoops said. Once identified, a magnet is put on the patient room entryway denoting that the the infant is on “NINJA Watch,” which serves as a reminder to closely review medications. “The success of the program is due to in large part to the strong pharmacist support,” she said.

The pharmacists review a screening report of patients with high NTM exposure each morning and manually verify the exposure. Infants with a high exposure then receive a daily serum creatinine test during and for two days post-exposure or post-AKI resolution, whichever occurred last. During this time, the team discusses possible alternative medications, drug dosages, timing of drug levels, and hydration status. Previously, the infants would have only received the test every three to five days.

“It tells the neonatologist that this kidney is at risk of injury and makes everyone ask, ‘are these the medications the baby needs? Could we adjust them, even if we just reduce the dose? How do we reduce the risk of AKI if they really do need these medications?’” Stoops said. Often, she said, “It’s just a simple act of being mindful about what you’re doing.”    

The NINJA program is now being rolled out throughout Children’s in other intensive care units, and validated at Cincinnati Children’s Hospital. 

Help for Children With Kidney Disease

Learn about the Pediatric and Infant Center for Acute Nephrology at Children’s of Alabama.


[1] Rhone ET, Carmody JB, Swanson JR, Charlton JR. Nephrotoxic medication exposure in very low birth weight infants. J Matern Fetal Neonatal Med. 2014;27(14):1485-90.

[2] Jetton J, Boohaker L, K Sethi S, Wazir S, Rohatgi S, Soranno D, et al. Incidence and outcomes of neonatal acute kidney injury (AWAKEN): a multicentre, multinational, observational cohort study. The Lancet Child & Adolescent Health. 2017;1(3):184-94.

[3] Askenazi DJ, Griffin R, McGwin G, Carlo W, Ambalavanan N. Acute kidney injury is independently associated with mortality in very low birthweight infants: a matched case-control analysis. Pediatr Nephrol. 2009;24(5):991-7.

[4] Menon S, Kirkendall ES, Nguyen H, Goldstein SL. Acute kidney injury associated with high nephrotoxic medication exposure leads to chronic kidney disease after 6 months. J Pediatr. 2014;165(3):522-7 e2.

[5] Goldstein SL, Mottes T, Simpson K, et al. A sustained quality improvement program reduces nephrotoxic medication-associated acute kidney injury. Kidney Int. 2016;90(1):212-21.

Nephrology

Continual Performance Improvement in Pediatric Kidney Transplantation

The renal transplant team at Children’s of Alabama has performed more than 500 kidney transplants since 1968. To this day, continuous improvement remains at the heart of everything it does.

The hospital is part of the Improving Renal Outcomes Collaborative (IROC), a learning health system of 32 pediatric kidney transplant centers in the U.S. that share data and best practices in an effort to improve transplant outcomes.

“We know we can achieve better things more efficiently together than if we’re working individually,” said Children’s pediatric nephrologist Michael E. Seifert, M.D. 

Improvement Projects

One recent project involved improving blood pressure assessments. “We know that if we control blood pressure we get better patient outcomes and the transplant does better,” Seifert said. Yet an analysis of 17 IROC transplant centers found that blood pressure was being measured appropriately based on current guidelines at just 12% of transplant clinic visits.

Each IROC center had the freedom to design custom tools to fit its needs for improving blood pressure measurement. The answer at Children’s was paper-based tracking logs and regular meetings to review progress. The team also educated all staff on the importance of measuring blood pressure and how to measure it according to the most recent guidelines. “It was pretty simple things that, when applied systematically and consistently, led to prolonged improvement,” Seifert said. Today, at least 85% of clinic visits include an appropriately measured blood pressure and the team is working to improve that number.

The next project is to improve adherence to immunosuppressive drugs, a major risk factor for rejection and loss of the kidney transplant. The team is developing a questionnaire for parents and patients so they can identify the barriers to adherence and develop targeted interventions. “We have to get away from an accusatory approach to a partnership and ask, ‘How can we work with you to make it easier to take your medications?’” Seifert said.

Children’s is also a national leader in studying surveillance biopsies to help reduce acute rejection rates. Most pediatric transplant centers do not perform early surveillance biopsies at pre-specified time points because of their invasive nature, but Seifert and his team demonstrated that surveillance biopsies in the first six months after transplant can detect subclinical inflammation, which is associated with a nearly threefold increased risk of acute rejection and allograft failure. Treating patients who demonstrated such inflammation, they recently reported, significantly reduces that risk. Importantly, they also demonstrated that the  surveillance biopsy procedure was safe for pediatric patients, with extremely low rates of mild adverse events.

Bringing the Bench and the Clinic Closer

The transplant team also runs a robust translational research program, with half of transplant patients enrolled in at least one research study. One is a biorepository study in which patients’ blood, urine and kidney biopsy tissue is collected throughout and after the transplant process. “Then we can develop biomarkers of kidney transplant diseases that impact the survival of the transplant,” Seifert said.

The second study will identify determinants of cardiovascular health in pediatric and young adult kidney transplant recipients who have a high burden of cardiovascular risk. “Transplantation improves but doesn’t eliminate this risk,” Seifert said. “This study is

designed to understand certain unique cardiovascular risk factors, such as the impact of

early life stress, on cardiovascular and renal outcomes.”

The Transplant Experts

Learn more about kidney transplantation at Children’s of Alabama.

Cardiology

Taking a Multidisciplinary Approach to Congenital Heart Defects Months Before Birth

Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% (about 40,000) births per year. Most are diagnosed early in pregnancy, leaving parents months to obsessively worry over their baby’s fate. But at the UAB Fetal Cardiac Diagnosis and Care Clinic, a collaboration between the University of Alabama at Birmingham and Children’s of Alabama, families can learn early on in their pregnancy what to expect prenatally, during delivery and in the postnatal period from a team of specialized physicians focused on their baby’s specific needs.

“Families get hit with the news that their baby has heart disease and it’s like a body blow,” said Children’s cardiologist Robb Romp, M.D. “We can demystify some of the scariness,” he said.

Clinic participants include pediatric cardiologists, cardiothoracic surgeons, maternal-fetal medicine specialists and a geneticist. “It is one of the quintessential multidisciplinary programs we run,” Romp said. “The goal is to recognize what the problems are prenatally and then ensure all the necessary resources are in place to care for the baby after birth.”

The half-day clinic meets monthly with between three to five families, about 50 a year, whose babies are known to have complex congenital heart disease. Patients come from throughout Alabama and surrounding states.

The clinic “helps families understand how many different providers are assisting in the care of their baby and that we are all working collaboratively,” Romp said. It also provides a very real perspective on how the team makes decisions, because the clinicians talk through the case with the family, he said. For instance, the issues the obstetrician focuses on may be different from those of the cardiologist. “The needs of both patients, mother and baby, need to be balanced to ensure both do well during and after the pregnancy,” he said.

The team’s nurse practitioner, Laura Brasseale, coordinates all follow-up meetings and ensures the family tours areas of the hospital where their baby may require care.

Brian Casey, M.D., who directs the Division of Maternal-Fetal Medicine at UAB,spent 23 years at the University of Texas Southwestern in Dallas before moving to UAB in 2018. “After my arrival here, I was immediately impressed with this scheduled monthly meeting between the pediatric cardiologists and the Maternal-Fetal Medicine group at UAB,” he said. “This extraordinary collaboration allows for early discussions of prenatal treatment and delivery planning in order to optimize the baby’s outcome and  provides state-of-the-art care at a very high level for our patients.”

Fetal Diagnosis and Care

Learn more about the UAB Fetal Diagnosis and Care Clinic, a collaboration between the University of Alabama at Birmingham and Children’s of Alabama.