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Inside Pediatrics, Neonatology

Neonatal Consortium Advances Care for Patients with Rare Diagnoses

The Children’s Hospitals Neonatal Consortium (CHNC) works to improve patient outcomes. 

If you’re trying to make quality improvements, a good place to start is in the past. Historical data can hold the key to understanding what works, what doesn’t and what holds promise. But searching for answers in a small sample can be like panning for gold in a puddle. You need a stream of data to draw out the nuggets.

Prior to 2006, Children’s of Alabama was similar to most freestanding Children’s Hospitals: treating some of the sickest patients with unique conditions that didn’t always have textbook answers. Children’s neonatologist Tim Coghill, MD, was in the same position as his peers across North America; they knew there could be knowledge in numbers. With colleagues at 16 other Children’s Hospitals, he co-founded the Children’s Hospitals Neonatal Consortium (CHNC), an international group of level IV neonatal intensive care units (NICUs) that work together to improve patient outcomes. 

Now in its 16th year, the group consists of more than 40 top-rated Children’s Hospitals in the U.S. and Canada. All contribute to the Children’s Hospitals Neonatal Database, which allows them to compare a larger number of outcomes for complex patients and rare diagnoses and find the “gold” in their shared data.

Children’s neonatologist Allison Black, MD observes that, “We receive patients with rare diagnoses that you may only take care of once every 10 years. When you can pool the data on these patients with other centers, you can see if certain treatments and characteristics are associated with better outcomes and help formulate the best practices.”

One of the primary ways the CHNC establishes those best practices is through Collaborative Initiatives for Quality Improvement (CIQI) projects, such as STEPP-IN, a program aimed at improving neonatal surgical outcomes. The STEPP-IN initiative developed a standardized handoff and workflow process for patients being transported to and from the operating room. Through this process, the stability of infants during the time surrounding surgical procedures was greatly improved. Another quality improvement initiative, Erase Post-Op Pain, included an algorithm for managing and preventing pain after surgery in neonates. After initiation of these algorithms, the frequence of uncontrolled post-operative pain episodes following procedures decreased to less than 6% at Children’s of Alabama, a best in class outcome.  The CIQI projects often include clinicians, caregivers and specialists from various departments and disciplines throughout the hospital. Through the collaborations in these initiatives, there have been other permanent interdisciplinary teams established, such as the neurodevelopment care team, palliative care and infant feeding teams at Children’s. “Our involvement with the CHNC has helped foster a culture of collaboration, and this has helped us strive for a more well-rounded, multidisciplinary model when caring for our patients and supporting their families,” Black said.

Children’s involvement in the CHNC has provided the opportunity to help others seeking to improve care and create a collaborative environment in their units, as well. Hannah Hightower, M.D., presented at a national seminar highlighting her success with improving communications during high-stakes situations through a project involving debriefing after code events. In the past year and a half, Coghill and Black participated in two national workshops providing education to pediatric providers on difficult discussions and end-of-life decision making with families in the NICU. All three of these physicians have contributed to published manuscripts in the past year and have more in production through their involvement and collaborations in the CHNC. 

Outside of the QI projects, CHNC members also participate in an ever-expanding list of focus groups. Focus groups Children’s of Alabama participates in include:

  • Resuscitation
  • Discharge planning
  • Gastroschisis
  • Palliative Care and Ethics (PACE)
  • Neurosurgery
  • Micrognathia
  • Kidney and Urology
  • Necrotizing Enterocolitis
  • Genomics

These focus groups, said Black, “allow us to work together to develop the best practices for specific diseases.”  The greatest benefit of the CHNC is that patients get access to care that is constantly improving. “Through our involvement with the CHNC, we are lucky to be on the forefront of deciding how to best care for complex patients,” said Black. “We are constantly striving to gain knowledge and improve the care of our unique patient population, and in turn, our patients all benefit from this collective knowledge.”

Inside Pediatrics, Neonatology

Quality Improvement Significantly Improves Outcomes for the Tiniest Babies

Left, Colm Travers, M.D., and right, C. Vivek Lal, M.D., are neonatologists at Children's of Alabama and faculty in the Division of Neonatology in the University of Alabama at Birmingham Department of Pediatrics.

Left, Colm Travers, M.D., and right, C. Vivek Lal, M.D., are neonatologists at Children’s of Alabama and faculty in the Division of Neonatology in the University of Alabama at Birmingham Department of Pediatrics.

In 2014, when neonatologists C. Vivek Lal, M.D., and Colm Travers, M.D., began digging into the data on extremely preterm infants (those born before 28 weeks), they found that Children’s of Alabama and the University of Alabama at Birmingham had some of the best outcomes in the country. But there was still room for improvement.

Infants born so early are at high risk of death and intracranial hemorrhage, or brain bleeds, the most devastating outcomes in the first week after birth.

“We saw a tremendous opportunity to improve mortality and other outcomes,” said Dr. Lal. “We saw this as a chance to fine-tune our practices, and not only be the best in outcomes, but also create a narrative for others to follow.”

“Our goal was to reduce the rates of brain bleeds or deaths in the first week,” said Dr. Travers. “There’s some evidence that non-adherence to certain practices and a lack of standardization can lead to worse outcomes in the smallest babies. We felt that by standardizing care to the best available evidence we could improve those outcomes.”

That’s exactly what they did with the Golden Week™ program, a multidisciplinary, evidence-based, standardized quality-improvement plan to improve the care and outcomes of the micro-preemies. It incorporates a variety of changes in how care is provided, with detailed protocols for the first hour of life, the first 72 hours, and days four to seven.

When the initiative began in 2016, the rate of severe brain bleeds or death was 27.4 percent. Today it’s less than 10 percent and continuing to fall.

The team involves neonatologists and neonatal fellows, as well as respiratory therapists, nurses, residents, and other stakeholders who care for the tiny babies at the bedside.

The initiative began with a comprehensive literature search of every clinical trial or observational study related to mortality or brain bleeds in these babies, identifying successful interventions and then integrating them into the care pathway.

These include ensuring that the mother receives corticosteroids before delivery to help the fetus mature; delayed cord clamping after delivery; putting the baby into a certain position once they’re admitted; initiating evidence-based order sets; and limiting fluid and bicarbonate boluses and the use of inotrope drugs as well as blood transfusions.

Some of the changes were tiny, but with big payoffs, including how the nurses change the babies’ diapers. “We make sure they don’t move the head too much or lift the body too much. Anything that might cause a change in the blood flow going to the brain,” Dr. Travers said. Overall, the team made 24 changes in the care provided during the first week.

The key was not one change, but the changes as a whole, said Dr. Travers. “It was when we put all of these small changes together that we saw the impact,” he said.

The results are being published in the journal Pediatrics this spring.

Inside Pediatrics, Neonatology

Bringing Evidence to Bear in the Use of Perioperative Antibiotics

Ninety percent of patients in the neonatal intensive care unit (NICU) at Children’s of Alabama will undergo a surgical procedure during their admission, putting them at risk of infections and other complications. Thus, the NICU team has been implementing performance improvement initiatives to improve outcomes, including focusing on pain control and standardizing handoffs before and after surgery. 

The most recent initiative targets perioperative antibiotic use. “The vast majority of surgical patients will require some type of antibiotic during the perioperative period,” said neonatologist Allison Black, M.D., “and we noticed there wasn’t any standard as to the dose or type of antibiotics used for each procedure.” 

That’s a problem, she said, because prolonged use of broad-spectrum antibiotics may be harmful. “It changes the infant’s gut flora, increases the risk for antibiotic-resistant infections, and may have toxicities,” she said. 

Thus, the NICU team, including physicians, nurse practitioners, and pharmacists, collaborated with the general surgeons and each surgical subspecialty to devise a solution. The surgeons collected evidence and then recommended an antibiotic as well as its dose and duration based on the specific procedure. The team used these recommendations and the evidence supporting them to create the NICU Perioperative Antibiotic Prophylaxis guidelines. 

“Now, unless there is a specific reason, all perioperative antibiotics are ordered based on these guidelines, and surgeons follow the protocol,” Dr. Black said. “It’s like clockwork.” The result is less use of prolonged empiric antibiotics and less confusion over which to use. Another advantage is less exposure to nephrotoxic drugs that can lead to acute kidney injury, she said. 

The unit’s two pharmacists ensure the protocol is followed. “Initially, it was difficult to break our decades-long habit of asking the surgeons which antibiotic they preferred and for how long after each surgical case,” said clinical pharmacist Sadie Stone, PharmD. “With the perioperative guidelines in place, we can initiate an evidence-based regimen quickly for our most common surgical procedures.”  

Since instituting the guidelines, the pharmacists have been collecting data and tracking guideline compliance. “We discuss each surgical plan with the nurse practitioner based on the guidelines when the patient returns from surgery,” said clinical pharmacist Emily Evans, PharmD. Each case is then retrospectively reviewed to determine if the procedure has an antimicrobial course included in the guidelines. If so, the actual antimicrobial course is screened against the guidelines for adherence. “These guidelines have expanded our antimicrobial stewardship role in the NICU,” she said. 

“The hope is that reduction in the use of antibiotics will decrease the need for central lines, which, in turn, also reduces the risk of infections and associated complications,” said Dr. Black. The team also tracks post-operative infection rates to ensure there is no increase. 

“This initiative again shows the improvement possible with multidisciplinary collaboration,” she said. 

Inside Pediatrics, Neonatology

Using Quality Improvement to Improve Maternal/Child Health

Dr-Sam-Gentle-Neonatology-Resized

Children’s of Alabama neonatologist Samuel Gentle, M.D.

Children’s of Alabama neonatologist Samuel Gentle, M.D., is passionate about the tiny babies he treats—and passionate in his belief that healthcare professionals like him can always do better. That’s why he helped start the Alabama Perinatal Quality Collaborative (ALPQC), a statewide initiative devoted to improving the quality of care for women and children. “Quality improvement is something I’ve been intrinsically drawn to,” he said. “I love the application of data science to a healthcare setting, allowing a confluence of providers to demonstrably show their efforts have impacted a patient population.”  

The collaborative’s first project in 2018 was improving birth certificate accuracy. This might sound small, but accurate vital statistics and birth data are critical ingredients to monitor population health—particularly that of women and children—solve public health problems at the local, state and federal levels; and make wise decisions about where to spend limited dollars.  

When the initiative started, just 70 percent of the 25 participating hospitals were submitting accurate birth certificates based on 11 key variables, with low reporting accuracy for individual variables such as antenatal corticosteroids, birth weight and maternal hypertension. After this quality improvement initiative, 95 percent of enrolled hospitals were submitting accurate birth certificates.  

The pandemic hit before the collaborative could launch its next project. Instead of shutting down, however, “we pivoted,” Dr. Gentle said, hosting webinars about COVID-19 and maternal and child health to share best practices from other hospitals and to “continue to evolve and learn from each other.” 

Finally, with the country returning to some version of normal, the ALPQC was ready to move on to one of its next projects: neonatal opioid withdrawal syndrome (NOWS).  “Alabama saw a 20 percent increase in overdose deaths in 2020 compared to 2019,” Dr. Gentle said. “This is a critical time to address many of the aims set forth by this initiative.” In 2016, NOWS affected 6.7 per 1,000 in-hospital births with overall hospitalization costs of $572.7 million.1 In Alabama that year, nearly 600 infants covered by Medicaid were diagnosed with NOWS, an increase of nearly 100 percent from 2010. 

Using the Institute of Health Improvement’s model for improving quality, the initiative focuses on developing and instituting standardized practices around NOWS, including reducing stigma, increasing the use of non-pharmacologic care, and providing structural support for mothers, including addiction services and medication for opioid use disorder.   

“The global aim is to optimize care for mothers and their newborns with NOWS,” Dr. Gentle said. More specifically, the ALPQC hopes to reduce length of stay and exposure to pharmacologic treatments by 20 percent; and ensure that 95 percent of families are discharged with a collaborative plan linking them to community services. The project will run in conjunction with a third ALPQC initiative to decrease rates of severe maternal morbidity associated with hypertensive disorders of pregnancy. The collaborative hopes to have results by the end of the year. 

Although the ALPQC is still gathering data, at least one hospital cut the length of stay in half for infants with NOWS, Dr. Gentle said. 

The success of such statewide improvement requires a broad group of stakeholders, he said. “This work would not be possible without our partnerships,” he added, which include the Alabama Hospital Association, the Alabama Department of Public Health and payers. He also highlighted ALPQC Program Director Evelyn Coronado-Guillaumet’s leadership, as well as the consortium of hospitals’ continued engagement. “The hospitals’ shared experience certainly accelerates the work,” he said.  

Asked what’s next on the agenda, Dr. Gentle said telecommunication-based training for neonatal resuscitation. 


1 Strahan AE, Guy GP, Bohm M, Frey M, Ko JY. Neonatal Abstinence Syndrome Incidence and Health Care Costs in the United States, 2016. JAMA Pediatr. 2020;174(2):200–202.

Inside Pediatrics, Neonatology

Focus on Feeding in the NICU

Infants in the neonatal intensive care unit (NICU) are at huge risk of problems with oral feeding, potentially requiring surgical intervention if they can’t take in the nutrition required for growth and healing.  

Historically, specialized occupational therapists evaluated and treated babies who had feeding issues at Children’s of Alabama. But today, they are joined by specialized speech therapists. 

“The addition of speech therapists with special interest in NICU patients gave us an additional caretaker with a different background and skill set,” said neonatologist Allison Black, M.D. “We took advantage of both disciplines and their specialized, yet different, training and teamed them to create the infant feeding team.” 

“The teamwork begins during the evaluation process, even performing some of the tests such as swallowing studies and fiberoptic endoscopic evaluations of swallowing together,” Dr. Black said. Having two therapists work together for these studies is a bonus, said Christy Moran, an occupational therapist who works on the feeding team.  

For instance, she said, it is quite challenging to perform a modified barium swallow on an infant. With two therapists, however, one positions the infant and serves as feeder, incorporating the techniques used to support oral feeding. The other therapist prepares the barium and watches the screen. “It is a much better study with two therapists working together, so each can focus completely on their part instead of splitting their attention between one or the other,” Moran said.  

The therapists then collaborate to form a feeding and therapy plan, which they share with the rest of the NICU team. The approach continues until the patient is discharged home. 

“The patient benefits because they get evaluated by different people at different times, both of whom are experts at feeding infants,” Dr. Black said. “This helps us get a clearer overall picture of what the infant is truly capable of since a baby’s interest in feeding can depend on the time of day and multiple other factors, all of which are constantly changing in the NICU.”  

Working as a team also enables greater support for families and caretakers, said speech-language pathologist Allie Gilbert. “Since we work so closely together, there is a rhythm to our discharge sessions,” she said, “and parents seem to appreciate having both disciplines reinforcing the same recommendations.” 

Dr. Black is now collecting data on the impact the team has on infant feeding. Anecdotally, however, she said she’s seen greater success at getting babies to take oral feeds more quickly since implementing the team concept.  

Inside Pediatrics, Neonatology

Helping the Tiniest Babies Grow

Ariel A. Salas, M.D., a neonatologist at Children’s of Alabama and the University of Alabama at Birmingham (UAB), was completing his master’s in public health when he first became interested in growth and nutrition in premature infants. “It’s a growing field,” he said. For years, neonatology was primarily focused on lung disease because most survival was linked to the degree of respiratory disease, he said, but with significant improvement in respiratory care and outcomes, “we’re now trying to optimize outcomes among the surviving infants.”

Premature infants, particularly those born at the limits of viability, typically don’t grow well during their hospital stay and have a higher risk of developing long-term nutritional complications related to extreme prematurity. Yet nutritional issues were traditionally an afterthought.

Now, thanks to a five-year, $777,384 Mentored Patient-Oriented Research Career Development Award (K23), Salas hopes to change that. The award provides him with the mentorship, training, and research experience to become an independent clinician scientist and leader in neonatal nutrition research. As he wrote in his grant application: “My long-term career goal is to reduce the burden of postnatal growth failure through novel translational studies and large scale, multi-center clinical trials of promising dietary interventions that optimize growth, reduce dysbiosis of the gut microbiome, and ultimately improve neurodevelopment.”

The grant will support a study to determine if giving preemies protein-enriched human milk during their first two weeks can promote lean body mass accretion, stimulate maturation of the gastrointestinal tract, and modify the gut microbiome.

One thing that makes this study unique is its focus on lean mass growth versus growth overall, Salas said. “Preemies are born so small they can grow really fast, but that could be because they’re getting too much fat in the diet,” he said, which could lead to later problems, including obesity. “There are a lot of unknowns in the implications of changing fat mass in preemies.” Still, he said, it will take two decades before the full implications of improved lean mass in premature infants is known.

“The advantage of protein is that it’s so important for structural growth.” Indeed, preliminary evidence from another study he participated in found that increased protein did improve the amount of lean mass growth in premature babies, he said. Those babies received the enhanced milk when they were older and their condition more stable; this study will start babies on the milk in the first two weeks.

The study uses a human-based protein fortifier added either to the mother’s breast milk or milk from the milk bank. It also uses a novel approach of measuring biomarkers in urine to see if they can predict the amount of lean mass seen in the body scans.

It’s not clear how lean mass affects development, Salas said, since the field is so new. “It’s only been in the past 10 years that we started measuring lean mass with non-invasive methods in extremely premature infants,” he said. Data over the past decade suggests, however, that overall lean mass is the safest approach to growth, leading to greater length and other outcomes.

The next step in this research, he said, is to see how the additional protein is digested and absorbed in the intestines and how it affects the gut microbiome. “Possibly some of those microbes can facilitate the digestion and absorption of the nutrients and if we can improve both, we may be able to improve growth overall.”

“This is a fascinating area,” said Salas, “and it probably has more serious implications in preterm infants because they have so much potential for growth.”

Inside Pediatrics, Neonatology

Marking a Milestone: RNICU Goes More Than One Year Without Central Line Associated Bloodstream Infections

Three hundred and ninety days.That’s how long the Regional Neonatal Intensive Care Unit (RNICU) at the University of Alabama at Birmingham (UAB) has gone without a central line associated bloodstream infection (CLABSI). And that, in the world of tiny, sick babies, is huge.

Healthcare-acquired infections (HAI) are a major problem in all hospitals, said Lindy Winter, M.D., Medical Director, but particularly for premature babies. “They are more vulnerable to infections because their immune systems are immature,” she said, “and they can’t fight off bacteria in the same way that adults are able to.”

Ideally, the rate of CLABSIs in a NICU should be zero, she said. Buta few years ago UAB’s rate was higher than national benchmarks, a rate determined through a formula based on the number of days patients have an IV line and how often infections occur. It’s also a major quality indicator for hospitals, reported to the Centers for Disease Control and Prevention and required for US News & World Report’s Best Hospitals ranking.

Thus, in 2013, UAB NICU leadership launched a major initiative to bring down the rate of CLABSIs. It was not an easy task, Winter said. “It required a huge culture change,” she said, “because NICU clinicians around the country believed such infections were inevitable, a natural outcome because these infants were immunocompromised anyway and nothing could be done to prevent it.”

She and her team set out to prove them wrong. They started with operational changes in how the central line was inserted and accessed, working closely with materials management to try different products to improve sterility. They changed how the skin and devices were prepped, and moved from having a single nurse insert, access, and manage the line, including changing dressings, to a buddy system in which at least one nurse is PICC (peripherally inserted central catheter) certified.

They studied their data to see which babies were more likely to get an infection. They discovered it was those who had umbilical lines that had been inserted at birth and remained longer than five days. “We did a lot of education with providers about switching from the umbilical to a PICC line to move closer to that five-day goal,” Winter said.

They also added central lines to the list of 10 things clinicians discuss during their daily patient rounds. This, Winter said, reminds staff to think about central lines and if they were needed as part of their daily routine.

Their efforts paid off. By 2016, the NICU started seeing a steady reduction in CLABSIs. And then, starting in the summer of 2019, there were none for more than a year.  “We held our breath all year,” said Winter. When they reached the 365-day mark they celebrated, ordering in food from the staff’s favorite restaurants.

The streak eventually broke when a critically ill baby developed an infection. After the emergency was over, the team instituted a “swarm,” a rapid cycle debrief to figure out what happened. “He was very sick and we had to access the line frequently for medications,” said Winter. “We think that was the issue.”

 Since that one infection, there have been no others tied to central lines.

“It was such a team effort,” said Winter. It’s not just the doctors and nurses, but the respiratory therapists, housekeeping staff, even materials management, all working together to reach the goal of zero.

Editor’s Note: The UAB Department of Pediatrics Neonatology Division and its 23 board-certified neonatologists works in collaboration with the Regional Neonatal Intensive Care Unit (RNICU) at UAB and the Neonatology Intensive Care Unit (NICU) at Children’s of Alabama. The RNICU provides care for infants with varying diagnoses, including extreme prematurity and cardiac defects, in an environment equipped with the latest patient care technology. The RNICU is housed in UAB’s new Women and Infants Center. The NICU at Children’s of Alabama is a Level IV unit with 48 private rooms available for neonates and infants and provides care for patients similar to the RNICU in addition to surgical procedures, ECMO and specialized dialysis (Aquadex) for the neonatal population.

Inside Pediatrics, Neonatology

Addressing COVID-19 in the NICU

When you are responsible for the tiniest, sickest babies in the state and a global pandemic hits, there is no time to waste. That’s the approach Hannah Hightower, M.D., a neonatologist at Children’s of Alabama and the University of Alabama at Birmingham (UAB), and her team took in early March 2020, when normal life seemed to cease overnight. The state started shutting down March 13, and by March 19 she and her team released their first set of guidelines for COVID-19-related maternal and infant care.

“I realized this would have a great effect on how the Neonatal Intensive Care Unit (NICU) and infant nurseries operated,” Hightower said. “The virus was a great unknown and very little published guidance was available. There was also a lot of fear among the staff. I felt an urgency to provide our NICU staff a framework of how to safely handle patients and families in the midst of the emerging virus.”

So she took what little information was available from other regions and countries and sought guidance from her pediatric infectious disease colleagues to develop Guidelines of Care for COVID-19-exposed mothers and infants.

Those first guidelines would form the foundation of numerous iterations over the following year as the virus spread and more data on its effects in pregnant women and their babies emerged. “As time went by, the protocols changed pretty frequently because of the speed of the emerging data,” she said.

Early policy changes limited visitors to the NICU to only the mother and one support person in order to reduce possible exposure of infants and staff in the NICU. They also followed national recommendations to briefly separate COVID-positive mothers from their babies after delivery in order to prevent transmission to the infant. That changed over the summer as evidence emerged that as long as the mother was not severely ill and used proper precautions, including wearing a mask and performing hand hygiene, the risk of transmission to her infant was low.

The more the NICU team learned, the more they reached out to share their knowledge, Hightower said. “I coordinated with nursing leadership and other neonatologists around the state to share our experiences with each other,” she said. “It was a big collaborative effort.” She also spent a lot of time on Zoom and national conference calls with other pediatric and neonatal physicians, as well as the hospital’s own infectious disease specialists. In addition, there was also ongoing education for the staff about how to protect themselves and others.

A big part of their effort was educating the families about safety protocols and helping them get COVID tested when necessary, and then explaining the need to quarantine or isolate. After a year of living with the pandemic, Hightower now says, “We are more comfortable handling infants and families dealing with COVID-19. Even though vaccines are becoming available, it will remain important to continue masking throughout the year. For now, limiting visitors is also going to continue,” she said, and they still encourage families to limit their interactions outside the hospital.

Inside Pediatrics, Neonatology

NICU Care Coordinators: Getting Babies Ready for Discharge from the Day of Admission

Infants admitted to Children’s of Alabama’s Neonatal Intensive Care Unit (NICU) are closely monitored by care coordinators who begin planning discharge from the day of admission.

When a baby is admitted to the neonatal intensive care unit (NICU) at Children’s of Alabama, a special team of nurses has already begun planning the care required to send them home. Called care coordinators, their job is to ensure everything is in place for a positive outcome after discharge. “The doctor, bedside nurses and nurse practitioners are mainly focused on acute care of the patient,” said NICU Medical Director Carl H. Coghill, M.D., who, together with Children’s nursing administration, helped developed the discharge program when he became medical director in 1998. “The coordinators are focused on the long-term. They are the ones that see a patient from start to finish.”

 “They are a face parents learn to know and trust,” he said.

From routine immunizations, retinopathy of prematurity screenings, hearing evaluations and other newborn screenings, the discharge planners oversee the health maintenance of these tiny patients. They also round with the medical team every day to stay abreast of the most current plan for the baby, then incorporate that information into the discharge planning.

“As medicine has evolved, more preemies are, thankfully, surviving,” said Brenda Voulgarides, RN, who helped shape the position as the first care coordinator 20 years ago. “But they often go home with complex medical needs.” For instance, she still remembers the first time a patient was discharged with a gastrostomy tube or tracheostomy.

Today, as discharge nears, the team ensures that all pending consults, studies and lab work are followed; work to ensure that all consulting teams agree to the final treatment plan; and arrange all outpatient follow-up. They also provide individual education to the families on the baby’s care, including instruction on all equipment and medications. An important part of this is ensuring that parents learn how to be their child’s advocate and know when and who to call for help. After discharge, they provide the baby’s outpatient pediatrician with a comprehensive overview of the hospital course, medications, and plans to facilitate care transition.

The complexity of the patients means that the care coordinators have to be adept at working through many barriers during the education process. For instance, Voulgarides once taught a blind mother how to administer her baby’s medications and care for the infant’s tracheostomy.

The challenges of the babies mean that “the parents have to really understand their child’s diagnosis, reasons for the medicines and need for all of the follow-up,” said care coordinator Andrea Walding,RN. And that takes time. “It can’t be done over two days.”

The care coordinators also work to ensure that the baby’s team of physicians all agree on the discharge plans, said Voulgarides, so when the babies are seen in the outpatient clinic, “everyone’s philosophy aligns” and there are no major changes that require significant re-education of the parent or doubt about their prior care.

Coghill knows how important the coordinators are. “Often, parent satisfaction with the NICU has more to do with the care coordinators than with the doctors and bedside nurses,” he said.

Inside Pediatrics, Neonatology

Neurodevelopmental Multidisciplinary Care

Children’s of Alabama’s Neonatal Intensive Care Unit (NICU) developed a neuroprotective team two years ago in efforts to improve an infant’s neurodevelopmental care.

The first three years of life are a crucial time period for rapid brain growth and normal development. This growth and development relies heavily upon the surrounding environment and positive external stimulation. Now imagine a baby spending months, if not years, in the neonatal intensive care unit (NICU), an environment filled with noxious stimuli—loud monitors, bright lights, painful procedures and if a patient is acutely ill, limited positive physical interactions. A great obstacle, then, is how to provide babies the best care to ensure normal neurodevelopmental growth.

“Many of our NICU patients are already at particularly increased risk due to their underlying diagnoses and prolonged hospitalizations,” said neonatologist Allison Black, M.D. “Some patients stay in the unit up to two years,” she said. Black, along with therapists, nurses, and educators who care for the babies, felt they could do more to optimize their environment, care, and, ultimately, their neurodevelopmental growth and long-term outcomes.

They created a neuroprotective team two years ago to provide the initiatives needed to improve an infant’s neurodevelopmental care. This multidisciplinary team, composed of occupational, physical and speech therapists, care coordinators, physicians, neonatal nurse practitioners, bedside nurses, and nursing educators, is designed to improve communication and alignment among the multitude of health care providers who work with the infant.

The team first focused on providing education and increased awareness about neurodevelopmental care to staff and families through a “carnival,” – hands-on skills labs, simulations, learning modules and didactic education. Topics included safe sleep practices, wound and skin care, kangaroo care, feeding, developmental and sensory issues in premature infants, and the use of developmental products such the Dandle WRAP™, which can promote neuromuscular development and self-regulatory ability. More than 200 nurses participated.

The team continues to work on other initiatives that target bedside care providers and encourage family involvement including:

  • A book cart where parents can obtain books for themselves, their other children and their hospitalized infant.
  • A sensory book for each room with pictures and lullaby words so parents can read and sing to their infant.
  • Adult coloring books for reducing stress.
  • Ongoing and regular education with staff, including reminder cards with a summary of important “take home” points from the latest education, review of recent journal articles and monthly educational topics that have both been converted to virtual sessions during the coronavirus pandemic.

In 2019, the multidisciplinary team expanded to include audiologists and rehabilitation medicine as well as NICU physicians, nurse practitioners and bedside nurses, and began holding regular NICU neurodevelopmental rounds. “During weekly rounds, each patient is systematically discussed,” Black said, “including their current medical and neurodevelopmental care plan, specific short- and long-term goals as well as long-term overall prognosis.”

The discussions may lead to changes in the care plan, such as starting physical therapy earlier. “It’s helpful to have a team-based approach to developing the neurodevelopmental goals, discussing parents’ expectations and providing the space for an open forum to discuss each patient’s long-term medical prognosis,” she said.

This team encourages parents and other caregivers to be involved with their infant’s therapy, working alongside the rehabilitation physicians they will see in the outpatient setting. “Involving the rehab medicine team early in the course helps ease the transition once our patients are discharged home,” Black said. “I think the frequent discussion, early engagement and involvement of the multidisciplinary team and care providers will help us accomplish the ultimate goal of improving the overall neurodevelopmental care and outcomes for our patients.”