Browsing Tag

pediatrics

Gastroenterology

Managing Short Bowel Syndrome & Intestinal Failure

Sirine Belaid, M.D., created a new curriculum to teach residents how to manage the complexities of SBS and IF in pediatric patients.

By Conan Gasque

When Sirine Belaid, M.D., was a fellow at the University of Pittsburgh Medical Center, she noticed a problem with the management of patients with short bowel syndrome (SBS) and intestinal failure (IF)—residents had little confidence in caring for patients with these conditions. This was understandable—these patients have highly complex needs, and residents, being new in the profession, are still learning. Plus, they didn’t have the proper training. “I didn’t blame them because at that point in time there was no curriculum in place basically to help in the care of these patients,” said Belaid, who’s now an attending gastroenterologist at Children’s of Alabama and an assistant professor at the University of Alabama at Birmingham (UAB). She decided to address the problem by creating a curriculum herself.

“I wanted them to ease their insecurities and their fear and make them confident and comfortable in taking care of these kids,” she said.

Belaid created and implemented the curriculum during her fellowship in Pittsburgh before joining Children’s and UAB in August 2025. Since arriving, she has begun to implement the program for fellows in Birmingham and aims to do the same for residents. Her study on its effectiveness was published in early 2026.

When she started the project, Belaid aimed to create a curriculum that addressed complexities associated with SBS and IF. Patients with these conditions, she said, present with three key challenges: unique anatomy, required devices, and potential complications.

IF is often caused by SBS, which can occur in children in two ways—either they’re born with it or they develop it following surgical complications. The condition leaves them with a shortened small intestine or other anatomical changes that affect their ability to absorb nutrients. As a result, they’re dependent on parenteral nutrition through a central line that provides lipids, carbohydrates, and all the other nutrients they need to grow and, in some cases, survive. Patients often have gastrostomy tubes, jejunostomy tubes or stomas. These enteral tubes, central lines and the patients’ anatomical differences can predispose them to complications, such as ostomy prolapse or necrosis, gastrojejunostomy tube dislodgment, line dislodgment, or line infection.

For untrained residents and other providers, these complexities can be daunting. In some cases, their lack of understanding can lead to misdiagnosis. “I’ve had so many kids who see primary care providers with fever, and they have their central line, and [the providers] just say, ‘Well, it could just be a virus. Just go home,’” Belaid said. But if the child is actually suffering from a central line infection, that’s a mistake that could prove fatal, she added.

Historically, patients with IF rarely survived into adulthood, and many did not survive childhood. But thanks to the emergence of better treatment options in recent years, more patients with SBS and IF are surviving and thriving. “We are seeing more and more of these kids—they are becoming a growing population,” Belaid said. “And so we need to have our residents ready to manage the kids, especially when they come in the [emergency department].”

For Belaid, this underscored the urgency for developing a curriculum. And the job was the perfect marriage of her two passions: intestinal rehabilitation and education. So when she discovered the problem during her fellowship, she began doing research to see how she could address it.

Belaid started by asking the residents to fill out a needs assessment survey to determine in which areas they needed the most help. It revealed their confidence level in certain tasks along with their preferred education materials. Using this data, Belaid created a five-month curriculum divided into three parts:

  • In-person lecture – This lasted 45-50 minutes and summarized the most common topics related to intestinal rehabilitation while allowing for interactive discussions.
  • Total parenteral nutrition (TPN) workshops – Each week, Belaid presented two cases designed to help residents understand various parts of the TPN process, with the residents performing these tasks more independently as they progressed through the curriculum.
  • Quick-reference survival guide – Belaid created a guide residents could keep in their pockets or save digitally that summarizes key points and how to handle emergencies.

After residents completed the curriculum, Belaid asked them to fill out another survey to determine their progress. It showed that the curriculum significantly improved resident confidence across nearly every assessed skill, and it increased appreciation for the educational value of caring for patients with SBS and IF. Residents also gave excellent feedback on the curriculum.

Now, Belaid is working to replicate the process at Children’s and UAB. In the meantime, she’s sharing her successful strategies with other gastroenterologists across the country. She has presented her research at the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN) Annual Meeting, the American Society for Parenteral and Enteral Nutrition (ASPEN) conference, and other events. “I’m really hoping to disseminate this curriculum nationally,” she said. “That’s my goal.” She believes her approach can be effective for other specialties, as well.

In the process, she hopes her work will encourage more residents to pursue a career in intestinal rehabilitation, just as she was inspired to do during her own residency when she was first exposed to the complex needs of patients with IF. She says she discovered the profound satisfaction of helping children wean off parenteral nutrition and eventually have their central lines removed, allowing them to swim, run, and enjoy the everyday experiences of childhood. “Everything began during my residency at the University of Iowa Health Care, where my mentor, Dr. Riad Rahhal, first sparked my interest in intestinal rehabilitation. His guidance and mentorship shaped my passion for the field and ultimately influenced my career path, for which I am deeply grateful,” she said. “I just fell in love with it and with the patients and their parents. And seeing the joy on their face when their kid is finally without a line, without anything—it’s pure joy.”

Hematology and Oncology

Using integrative rehabilitation for cancer care

Kelli Chaviano, D.O., is helping pediatric cancer survivors through the Integrative Cancer Rehabilitation program.

By Heather Watts

Cancer treatment, while lifesaving, often comes with a wide range of physical, emotional and social challenges for young patients. Pediatric cancer survivors may face long-term effects from their treatments, impacting everything from mobility and strength to cognitive function and emotional well-being. To address these challenges, Kelli Chaviano, D.O., assistant professor in the Division of Pediatric Rehabilitation Medicine, developed the Integrative Cancer Rehabilitation service line (I CAN Rehab) to provide comprehensive rehabilitation support throughout the cancer care continuum.

“The need for specialized pediatric cancer rehabilitation was a driving force behind the creation of the I CAN Rehab service line,” Chaviano explained. “The initiative ensures that children do not only survive cancer treatment but also thrive afterward, with the ability to regain and improve physical, cognitive, and emotional abilities.”

The program facilitates improved collaboration between the rehabilitative care and oncology teams, allowing for more individualized and holistic treatment plans. “By addressing the specific needs of pediatric cancer patients, I CAN Rehab ensures that treatment is not just about survival but also about improving the functional capabilities and quality of life of these young patients,” Chaviano said.

It provides a multifaceted approach, including rehabilitative therapies, orthotics/prosthetics, and therapy care, all aimed at enhancing both physical and psychological recovery. The service is structured to offer care at different levels, from acute consultations to outpatient follow-ups, ensuring that patients have continuous access to vital rehabilitation support.

Institutions such as the Commission on Cancer, the National Comprehensive Cancer Network, the American Cancer Society, the American Society of Clinical Oncology, and the National Academy of Medicine have recognized the importance of rehabilitation throughout the cancer care continuum—before, during, and after treatment.

The creation and growth of I CAN Rehab was made possible through the dedication and support of department and division leadership recognizing the importance of cancer rehabilitation and aligning it with the organization’s mission of providing comprehensive and compassionate care. Additionally, the collective efforts of pediatric rehabilitation medicine, oncology, and therapy colleagues have been central in reinforcing the collaborative nature of the service line.

The supportive environment at the University of Alabama at Birmingham (UAB) Department of Pediatrics and Children’s of Alabama has allowed the program to grow through key developments such as educational initiatives, the creation of treatment protocols, and increased research in cancer rehabilitation.

A notable program expansion is the I CAN LEAP initiative (Integrative Cancer Rehabilitation: Launching Early Acute-rehab Pathway). This two-week, individually tailored program is designed for children with cancer who need intensive rehabilitation early in their treatment process. By providing acute therapy, I CAN LEAP ensures functional improvements through personalized therapy intensity and promotes active collaboration among pediatric rehabilitation medicine specialists, oncologists, and therapy teams.

The I CAN Rehab service line represents a crucial advancement in pediatric cancer care, ensuring that children not only survive but thrive throughout and after their cancer treatments. By integrating rehabilitation into the cancer care continuum and fostering collaboration among multidisciplinary teams, I CAN Rehab helps children regain physical, emotional, and social well-being. As the service line continues to evolve, it holds great potential to improve the lives of countless young patients while pushing the boundaries of cancer rehabilitation research and practice.

Through its expansion, the program is not only transforming the care model at Children’s of Alabama but is also gaining recognition at a national and international level for its innovative approach to pediatric cancer care.

Neurology & Neurosurgery

Children’s and UAB expanding access to promising DMD therapy

A researcher working in a lab at UAB (File photo)

By Angel Pine

Children’s of Alabama and the University of Alabama at Birmingham (UAB) Department of Pediatrics are expanding access to a promising investigational therapy for patients with Duchenne muscular dystrophy (DMD), offering new hope for families affected by the progressive neuromuscular disease.

Through an expanded access program, they will begin offering delpacibart zotadirsen, a novel antibody-oligonucleotide conjugate (AOC) developed by Avidity Biosciences. The program gives select patients access to the therapy before full U.S. Food and Drug Administration approval while researchers continue evaluating long-term outcomes.

Samantha Weaver, DNP, CRNP, assistant professor in the UAB Division of Pediatric Neurology, says the therapy represents an important step forward in the treatment of DMD.

Samantha Weaver, CRNP

“There is still no cure for Duchenne muscular dystrophy, therefore we are always interested in expanding access to therapies that may improve quality of life and slow disease progression,” she said.

Duchenne muscular dystrophy is an inherited neuromuscular disorder caused by changes in the DMD gene, one of the largest genes in the human body. The condition primarily affects boys because it is inherited in an X-linked pattern. Sequence changes in the DMD gene prevent the body from producing dystrophin, a critical protein that helps protect muscle cells during movement and contraction. Without dystrophin, muscles become increasingly damaged over time. “In the absence of dystrophin, fragile muscle fibers become susceptible to contractile injury, leading to damage and progressive weakness,” Weaver explained.

Early signs of DMD can include delays in walking, enlarged calf muscles, and weakness in the hips and thighs. Symptoms typically worsen throughout childhood, with many patients losing the ability to walk between ages 8 and 12 years of age. In later stages, the disease can affect the heart and lungs, leading to serious complications such as heart and respiratory failure.

UAB and Children’s currently care for approximately 80 patients with Duchenne muscular dystrophy through the multidisciplinary Muscular Dystrophy Association (MDA) clinic, the only nationally designated MDA care center in the state.

Over the past two decades, advances in genetic research have significantly improved treatment options for DMD. While early therapies focused primarily on reducing inflammation through long-term steroid use, newer approaches aim to address the root cause of the disease via dystrophin restoration.

Steroids remain a standard treatment to help slow the inflammatory damage that occurs alongside muscle breakdown. Combined with multidisciplinary care, these therapies have improved life expectancy for many patients. “Thanks to routine corticosteroid treatment and coordinated multidisciplinary care, life expectancy for individuals with Duchenne muscular dystrophy has improved dramatically, with many patients now surviving into adulthood,” Weaver noted.  

Delpacibart zotadirsen is an antibody-oligonucleotide conjugate, or AOC. An AOC uses a laboratory-made genetic molecule or PMO to bind to dystrophin RNA. The PMO helps the cell bypass the faulty sections of genetic instructions. A new “genetic blueprint” is formed, one that provides instructions for restored dystrophin production. Rather than permanently changing DNA, AOC therapy works by modifying RNA instructions after they are copied from the gene but before they are used to build proteins. “Although full dystrophin restoration may not be possible, enough functional protein may create a milder disease phenotype,” Weaver explained. “Even partial dystrophin restoration can lead to meaningful improvements in disease severity and progression.”

Earlier generations of exon-skipping therapies have provided modest results. Passive uptake of molecules into muscle cells produced small increases in dystrophin on muscle biopsy and limited improvements in motor function. While those therapies received accelerated FDA approval, researchers continued working to improve the selectivity of these treatments.

Delpacibart uses an antibody-mediated delivery system designed to improve uptake into muscle cells. By selectively binding to muscle cells, researchers can better tailor dosing and reduce the risk of toxicity.

According to Weaver, this next-generation approach may significantly improve dystrophin production compared to previous therapies.

In randomized, placebo-controlled trials, data supported a mean increase of approximately 25% of normal dystrophin production from baseline after four months of treatment, with some patients reaching as high as 54% restoration. Researchers also observed more than an 80% reduction in creatine kinase, a muscle enzyme that is typically elevated in patients with DMD due to ongoing muscle damage.  

“We do not currently have therapies that produce this degree of creatine kinase improvement,” Weaver said. “Although these findings are encouraging in small research numbers, how these will translate to actual strength and slowing of disease is still being studied.”

The therapy is delivered once every six weeks because it does not permanently alter DNA and must be re-dosed to maintain its effect.

Only a small percentage of patients with Duchenne muscular dystrophy are eligible for exon 44 skipping therapy. Weaver estimates about 6-7% of patients have gene variants that make them candidates for this treatment. While that percentage is relatively small, Weaver emphasizes the broader significance of the program. “Six percent may not sound like a lot, but it is still meaningful for the patients who qualify,” she said. “More importantly, if this approach continues to succeed, the hope is that the same technology can be adapted to target other variants and help many more patients in the future.”

The expanded access program has received institutional approval and is supported through all required regulatory channels. UAB is now preparing to enroll eligible patients.

For families affected by Duchenne muscular dystrophy, each scientific advancement represents another step toward better treatment options and improved outcomes. “This is a really exciting development in Duchenne care,” Weaver said. “Every breakthrough moves us closer to changing the long-term trajectory of this disease.”

Inside Pediatrics

Inside Pediatrics Offers the Latest on Kids’ Care

The Inside Pediatrics podcast features Children’s experts with advice for parents and insight about medical advances.

Inside Pediatrics is a podcast series featuring specialists at Children’s of Alabama and the University of Alabama at Birmingham (UAB). Episodes cover topics related to pediatric health and wellness, along with research, treatment, and more. Experts provide advice for parents, as well as insight about work they’re doing to improve patient care.

FEATURED EPISODES

Creating a Statewide Network for Parent-Child Interaction Therapy

Children’s of Alabama has been offering PCIT to children and their parents for years. In 2022, recognizing the increased need for this therapy across Alabama, the Children’s behavioral health team began training other providers across the state to offer it. The result is a statewide network of PCIT trainers to help Alabama’s children. In this episode, Arista Rayfield, Ph.D., explains how the therapy works and the impact of teaching other providers how to use it.

Proper Nutrition for Young Athletes

For young athletes, proper nutrition can lay the foundation for a successful performance. In this episode, Dr. Darby McElderry, a pediatrician at Children’s of Alabama, explains what competitors should eat before, during, and after a game, along with other tips for proper nutrition and hydration.

To find all episodes of the Inside Pediatrics podcast, click here. You can also find them on all major podcast platforms. And you can check out our peer-to-peer podcast, the Children’s of Alabama PedsCast.

Gastroenterology

Revival of Split-Liver Transplant Program Expands Access to Organs

Marcos Pozo Jatem, M.D. (left), and Saulat Sheikh, MBBS (right), performed a split-liver transplant in the fall of 2025.

By Charles Buchanan

Infants and children needing liver transplants face a unique challenge: The number of available donor organs, which is already limited, dwindles even further for them because most donated livers are simply too big to fit their small bodies. That can mean a long wait for a transplant and greater frustration for families.

Now Children’s of Alabama and the University of Alabama at Birmingham (UAB) are collaborating to offer split-liver transplantation, a potentially game-changing, life-saving solution for these young patients. Split-liver transplantation is “an opportunity to help two patients with one organ,” said Stephanie Saaybi, M.D., a pediatric gastroenterologist at Children’s who is part of the liver transplant team. During the complex procedure, one liver from a deceased donor is divided between two recipients, with the smaller left lobe usually going to a pediatric patient while the larger right lobe is reserved for an adult patient. Each segment grows along with its recipient and serves as a normally functioning organ, Saaybi said.

In the fall of 2025, surgeons from Children’s and the UAB Division of Transplantation successfully performed the intricate operation for the first time in nearly a decade. Fewer than 50 medical centers in the United States offer split-liver transplantation, and Children’s, partnering with UAB, is the only one in Alabama. Reviving the procedure is both a major milestone and an important step toward expanding access to donated organs for infants and children on the liver transplant waitlist.

Stephanie Saaybi, M.D.

Split-liver transplantation also helps fulfill a need for more treatment options for more patients with liver diseases. “We want to serve the whole spectrum of acuity and severity,” Saaybi said. According to the American Liver Foundation, approximately 15,000 children across the country are hospitalized for liver diseases annually. About half of pediatric liver transplants result from biliary atresia, a condition in which blocked ducts cause bile to build up in the liver and damage it, Saaybi explained. Other frequent diagnoses in the Children’s liver transplant program, which receives referrals from across Alabama and neighboring states, include acute and chronic liver failure causes such as genetic disorders, autoimmune liver disease, cholestatic disease, metabolic dysfunction-associated liver disease, and liver malignancies such as hepatoblastoma, among other conditions.

Split-liver transplantation is rare because planning and orchestrating each one is a logistical feat. For the 2025 procedure, the donor operation took place in another state, and the liver segments were transplanted into recipients at both Children’s and another institution, as determined by the national transplant allocation program and surgeons. A successful outcome depends upon precise timing and coordination of several operations at different hospitals and the contributions of a multidisciplinary, multi-institutional medical, nursing, and administrative team. Saaybi is one of two pediatric gastroenterologists specializing in transplant hepatology who are part of the Children’s/UAB partnership, along with surgeons, coordinators, anesthesiologists, nephrologists, interventional radiologists, and pediatric intensive care unit staff. Because transplant surgery impacts every aspect of life—for the patient’s entire life—the team also includes pharmacists, dietitians, social workers, child life specialists, psychologists, and even a school liaison. Marcos Pozo Jatem, M.D., a transplant surgeon, leads the Pediatric Liver Transplant Program at Children’s.

A core group of specialists representing the larger team meets regularly to coordinate each patient’s evaluation, transplantation surgery, and postoperative care through the transition to adult care. “Our discussions give us opportunities to learn from one another and explore ways to better serve patients,” Saaybi said. For example, the group implemented an intraoperative dialysis protocol so that they could perform transplants in critically ill patients—a project that has improved care and yielded positive outcomes, she added. The specialists also standardized their immunosuppressive protocols and continue to review and revise guidelines and procedures as needed.

Another advancement critical to the success of split-liver transplantation is the use of machine perfusion technology, which pumps blood continuously through the donated liver and lengthens the amount of time the organ can stay alive outside the body. As a result, Children’s and UAB can accept a donated liver from anywhere in the country while reducing its exposure to cold storage, thus preserving the organ’s viability.

With the team, expertise, and technology in place, split-liver transplantation at Children’s and UAB is poised to help more infants and children stop waiting and start thriving. “We initially see patients at their most vulnerable,” Saaybi says. “It’s humbling to be with them through the whole continuum of care, and a blessing to watch them change and grow—to get them to the point where they talk about things like playing baseball or going to college. This is their new chance at life.”

Behavioral Health

A statewide network for parent-child interaction therapy

Arista Rayfield, Ph.D., (middle) and the Children’s behavioral health team hosted a PCIT conference in March 2026.

By Conan Gasque

When Ashley Pittman, LPC, signed up for parent-child interaction therapy (PCIT) training at Children’s of Alabama in 2023, she had no idea what to expect. Even after earning her certification, she realized it was like no other therapy she had offered. But an experience with one of her first PCIT clients was a revelation.

“At first, I was… a little bit out of my comfort zone,” she said. “But then I started to see results, and I started to recognize just how beautiful it was.”

Pittman is a licensed professional counselor in Enterprise, a small, rural city in south Alabama. Since her training, she’s seen many PCIT clients, including one who had a profound impact on her view of the therapy, which helps to correct moderate-to-severe behavioral problems in young children by teaching the parent and child how to interact effectively. During one of the sessions, the mom began to cry. “It was a very beautiful moment where she was truly connecting with her kid,” Pittman recalled. “And she told me that she felt that she had never been able to do that, did not know how to do that, and that she herself probably never felt connection with her own parents.” For Pittman, the moment was eye-opening.

“It came alive within me that there was beauty in what was happening with PCIT that I just fell in love with and became very passionate about,” she said.

Pittman says moments like this happen frequently with her PCIT clients, who make up about two-thirds of her business. And they’re likely happening with other counselors and clients across Alabama thanks to Children’s of Alabama’s commitment to training providers like Pittman.

How PCIT works

Shelia Eyberg, Ph.D., developed PCIT at the Oregon Health Sciences Center and later refined and researched it at the University of Florida. She designed it as a way to treat disruptive behavior disorders in young children. These behaviors can include tantrums, refusal to follow directions, aggression, and problems in school. For families experiencing these problems, a therapist trained in PCIT can determine if it is the right fit.

Ashley Pittman, LPC

PCIT works by allowing the therapist to monitor and coach a series of playtime interactions between the parent and child. It is conducted in the play setting because that is how young children learn best. This happens in two phases: Child Directed Interaction (CDI) and Parent Directed Interaction (PDI). In CDI, the therapist teaches the family skills that a play therapist would use. In PDI, the therapist teaches parents how to be consistent and predictable to improve how children follow their directions. Then, during the interactions, the therapist watches from another room, usually behind a one-way mirror, and coaches the parent using a wireless earphone. Families typically complete PCIT in 12 to 16 weeks, and the results can be transformative.

“It has a huge impact,” said Arista Rayfield, Ph.D., who learned the therapy under Eyberg and serves as the PCIT service line leader at Children’s. “Behavioral problems are decreased. Parent-child relationships are improved and are very warm, supportive relationships. Parents quit getting calls from teachers. That is a big improvement.”

Coaching is what makes PCIT uniquely effective. “We are teaching [parents] the skills, and so we try to focus on when they’re getting it right: ‘We want to see more of this. You’re doing a great job following their lead,’” Rayfield said. “So, we’re really trying to focus on what the parent is doing well and help them make the changes sometimes that are pretty small and you’re not aware of unless someone is observing you and helping give you feedback on your interactions.”

This observation gives the therapist an up-close view of the child’s progress. “It’s wonderful working with young children because you see the changes happening in the moment,” Rayfield said. “I see the techniques working within the very session that we are in. I see children making changes based on how the parent is interacting with them.”

Training Other Therapists

Rayfield has been training parents on how to interact with their children for 35 years, but in 2022, she, her Children’s colleagues, and two other University of Florida graduates—Elizabeth Brestan-Knight, Ph.D., and John Paul Abner, Ph.D.—began training other therapists in Alabama on how to perform PCIT. The trainings are possible through a partnership with the Alabama Department of Mental Health (ADMH) and are supported by two grants, the Pediatric Access to Telemental Health Services (PATHS) grant and the Promoting Positive Early Experiences and Relationships (PPEERS) grant. So far, the group has trained 69 therapists across 21 Alabama counties to provide PCIT.

“That has made a huge difference in access for children across our state. Everybody can’t drive to Birmingham to get treatment,” Rayfield said. “That means that families can get access to treatment without a long wait list and closer to their home.”

Rayfield and her team have also trained several providers across the state to become within-agency trainers, meaning they can train others within their own agency on how to perform PCIT. This multiplies the number of PCIT-certified therapists statewide.

In March, Children’s and ADMH hosted a PCIT continuing education conference for the therapists they have trained, those in the process of training, and others who might be interested. “There’s a wonderful community internationally with PCIT, and we’re trying to build that in our state to help people feel supported and to be able to continue to provide this therapy for young children,” Rayfield said.

But Rayfield’s influence doesn’t end at the state line. In 2025, she became a regional trainer through PCIT International. She’s one of only about 50 such trainers nationwide.

Children’s investment in PCIT

In the last five years, Children’s has ramped up its investment in PCIT. In addition to the training the behavioral health team has provided across the state, they’ve also added more PCIT-certified providers within their department and built a space specifically designed for PCIT. The goal is to increase access for children across the state. Simply offering PCIT can help achieve that. Rayfield says the therapy is designed to help the child graduate the program so they no longer need therapy, which frees up space for more children who need help—more children who can be served by the growing network of PCIT providers Children’s is developing throughout the state.

Cardiology

A bridge to better outcomes

The bridges that connect UAB and Children’s of Alabama play a key role in the Bridging the Fetus collaboration.

By Conan Gasque

Among the crucial features of Children’s of Alabama’s Benjamin Russell building, which was added to the hospital’s campus in 2012, is a set of bridges that connect Children’s to the University of Alabama at Birmingham (UAB) Hospital. The two institutions have worked in partnership for decades, and the building and adjoining bridges further enhanced the relationship. Specifically, they allowed for patients to be transported efficiently from one hospital to the other when necessary for care. A collaboration called Bridging the Fetus takes advantage of this arrangement to help patients with congenital heart disease. It’s helped save many lives, even in some of the most dire situations.

The collaboration involves the Children’s cardiovascular ICU team, cardiologists, cardiac surgeons, UAB’s Maternal-Fetal Medicine team, and neonatologists. And the bridge, of course, which is perhaps the program’s most unique feature.

“The setup we have with the bridge is a big deal for us because it allows us to best take care of moms but also best take care of babies by being so close,” said Laura Brasseale, MSN, CRNP, chair of the Children’s cardiac fetal team.

Laura Brasseale, CRNP

Proper care for both the mom and baby is vital in these cases because many of the congenital heart diseases the team handles are identified prior to birth. Thus, the team must have a detailed plan in place for delivering the baby at UAB, then getting it to Children’s for care while the mom remains at UAB. Thanks to the bridge that connects the UAB Women and Infants Center to the Children’s Heart Center, the transfer can happen in mere minutes. As a result, Children’s and UAB have taken referrals from other parts of the Southeast in these cases where, in another city, the delivering hospital might be 20 minutes or farther away from the Children’s hospital. “It is very unique to our situation that we have all these resources literally connected to each other,” Brasseale said. Few other hospitals in the Southeast offer this type of setup.

The collaborative effort of Bridging the Fetus begins as soon as a patient is diagnosed with a congenital heart disease. Brasseale follows each case and takes information from the mom’s clinic visits with obstetricians and cardiologists. She uses this info to compile a list with data to help the team plan for the delivery. Before the baby is born, the team provides advice and counseling for the parents. They also arrange logistical services, such as transportation assistance, long-term stay options and other resources. Lactation specialists meet with the mom to discuss feeding options and the importance of breast feeding. Palliative care assists with end-of-life decisions, if necessary.

From the time the diagnosis is made, members of the team meet regularly to discuss details of the case and form a plan of care for the child’s delivery. “It just makes us aware so that we save beds for these neonates,” Brasseale said. “We get them transferred over from [the UAB Regional Neonatal Intensive Care Unit] as soon as possible so that we can plan their next steps after birth.”

Typically, the next steps involve taking the child across the bridge to be seen immediately by the heart team and undergo and operation shortly thereafter. The mother, meanwhile, remains at UAB to be cared for at the Women and Infants Center.

Cases like these are highly complex, Brasseale said. And the biggest challenge is the simple fact that no one knows when the baby will arrive. But Bridging the Fetus streamlines that for everyone. “We plan according to your due date, according to whether mom has any pre-existing conditions, whether she’s had other children before, where they live. All of that plays a factor in terms of how we plan for delivery on these babies.”  

Because of the planning, the team will know if the baby needs immediate care or if they can stay in the NICU for a few hours until a bed opens up. “It’s definitely a good heads up and provides a multidisciplinary approach for the family,” Brasseale said, “because Maternal-Fetal Medicine can refer them to genetic counseling and the neonatologist so the family can meet a wide variety of people before having the baby. So it can kind of calm nerves as far as that goes.”

The team also prepares the family by giving them hospital tours beforehand so they’ll get “an up-close look of who is going to be taking care of their baby and what their baby’s future looks like,” Brasseale added.

The most notable success stories owed to Bridging the Fetus involve babies with hypoplastic left heart syndrome with intact atrial septum. Babies with this condition lack intracardiac shunting, so oxygenated blood can’t reach the body. Most require immediate extracorporeal membrane oxygenation (ECMO) cannulation after birth to increase the chance of survival to palliative surgery.

Children’s and UAB have seen four such cases since they started Bridging the Fetus in 2016. Three of the babies were cannulated onto ECMO within 15 minutes of birth. Two had successful heart transplants. The results far exceed those at other centers, Brasseale says, and it’s due to the team’s coordinating and multidisciplinary approach. Just getting everyone on the same page has a complexity of its own, with multiple service lines involved and each one featuring 10-20 people with rotating on-call schedules. “There are so many players. I think that’s the biggest part,” Brasseale said. “So it’s just nice for the information to all be in one place considering there’s so many different people who need to be involved.”

The team also is participating in research related to its work with Bridging the Fetus. One study is taking a look at how delayed cord clamping among neonates with congenital heart disease can effect neurodevelopmental outcomes. Another is a collaboration with the Pediatric Cardiac Critical Care Consortium (PC4) and aims to advance understanding of the maternal-fetal environment and its influence on postoperative outcomes in children with congenital heart disease. “The role of maternal characteristics in postnatal outcomes is a major knowledge gap in the treatment of congenital heart disease,” Brasseale said. “Identifying these prenatal risk factors is the first step toward developing therapeutics to modify them.”

The team hopes these studies will pave the way to a better understanding of these highly complex neonates, which can only help further streamline their care and produce more positive outcomes.

“It’s really cool to see the team come together to provide the best care for the patient, because it’s a lot of different people from a lot of different disciplines and even hospitals,” Brasseale said. “But it’s very exciting to see a baby thrive that was really not destined to have a good outcome. So it’s very exciting to be a part of such a big team.”

Neonatology

Research reveals optimal approach for patent ductus arteriosus

An X-ray shows a patent ductus arteriosus. (File photo)

By Maureen Salamon

Doctors have long debated whether very premature babies with patent ductus arteriosus (PDA)—a cardiac condition where a blood vessel that normally closes shortly after birth remains open, stressing the heart and lungs—should be immediately treated with medication to close the vessel, or whether it’s better to wait and see if the vessel closes on its own.

Compelling new research by Children’s of Alabama neonatologist Waldemar A. Carlo, M.D., reveals important answers. Along with researchers from 32 other hospitals across the United States, Carlo sought to learn whether simply monitoring infants and intervening only if needed, compared with actively treating PDA, improves survival or reduces serious lung problems.

Results of the study, published last December in JAMA, surprised even Carlo. Monitoring infants and intervening only if needed, rather than treating the PDA up front, improved survival or serious lung problems—the main outcome—with the rate of developing bronchopulmonary dysplasia (a serious chronic lung disease) essentially the same in both groups. Notably, however, babies in the watch-and-wait group were significantly more likely to survive: 4.1% of infants in the expectant management group died, compared to 9.6% of those in the medication treatment group.

Waldemar Carlo, M.D.

“I don’t think anyone was expecting to see such a large difference in mortality,” said Carlo, who’s also the Edwin M. Dixon Professor of Pediatrics and director of the Division of Neonatology at the University of Alabama at Birmingham (UAB).

PDA is the most common cardiovascular condition in preterm infants, and Children’s clinicians monitor or treat about 100 babies with the condition each year. Occurrence of PDA jumps to more than 50% for extremely premature infants such as the 482 included in the study, who were all born between 22 and 28 weeks of pregnancy.

“PDA tends to be present in the sickest premature babies with the worst outcomes, which is why there has been a lot of interest in closing the PDA,” Carlo says. “But the data have been controversial on whether these babies need treatment or not.”

A small PDA might cause no symptoms and resolve on its own. Larger ones can lead to a variety of dangerous complications, including rapid breathing or shortness of breath, poor feeding, failure to thrive, fatigue, and frequent respiratory infections. In the study, which was carried out as part of the National Institute of Child Health and Human Development Neonatal Research Network, expectant management proved superior to all medications or other approaches used in babies randomly assigned to active treatment, including acetaminophen, ibuprofen, or indomethacin as well as surgery.

“Treatment to close the patent occurred in both groups, which is mimicked in clinical practice,” Carlo said, “and none of the treatments really had a benefit. The study design was pragmatic and easy to implement. It can help clinicians in a practical way.”

The trial reinforced how neonatologists at Children’s have long managed PDA, Carlo noted, but participating in such a high-profile, comprehensive effort benefits everyone involved.

“Our patients can take advantage of state-of-the-art care through randomized, clinical trials and innovative inventions. The trial is funded by the government, and the government benefits because we find out what are the right treatments in these patients,” Carlo said. “It’s a win-win situation.”

Hematology and Oncology, Orthopedics

Combining two specialties, Hess plays unique role at Children’s

Matthew Hess, M.D., specializes in pediatric and adult orthopedic surgical oncology.

By Maureen Salamon

After witnessing his beloved drum teacher cope with sarcoma, Matthew Hess, M.D., knew starting in high school he wanted to someday work in oncology. That fraught life stage also brought a variety of orthopedic injuries that piqued Hess’s interest in orthopedics. Then he learned he could combine the two specialties by performing orthopedic surgery on children and adults with cancer.

The result has benefited patients at Children’s of Alabama. Hess, who came to Children’s in September 2024, is the only specialist in Alabama who’s trained in both pediatric and adult orthopedic surgical oncology.

The conditions Hess tackles are fairly uncommon, he notes, attracting only about 20 new fellows nationwide to his dual specialty each year. In children, he most often treats osteosarcoma, Ewing sarcoma, and non-cancerous tumors that are locally aggressive and threaten to destroy bone. In adults, Hess usually sees patients with metastatic cancer that has spread to bone and requires surgical stabilization or reconstruction.

Also an assistant professor of orthopedics at the University of Alabama at Birmingham (UAB), Hess—who earned his medical degree from the UAB Heersink School of Medicine and spent his residency at UAB Hospital—was thrilled to come back into the fold by joining Children’s.

“I had some faculty members who put teaching and mentorship at the forefront of practice and inspired me to want to do that for the residents around me,” he said. “The thing that stood out to me was that they were extremely collaborative.”

Hess is using that example well. His role requires extensive collaboration with a wide variety of other highly trained physicians, including medical oncologists, pathologists, and musculoskeletal radiologists. Children’s and UAB also boast a cross-institutional collaboration group designed for adolescent and young adult (AYA) patients—those ages 15 through 39—in which Hess features prominently because of his skillset.

“AYA patients exist right in the middle and can get a little lost in translation—do we treat them like an adult, or like a kid?” Hess said. “Osteosarcoma in particular is pediatric, but we see it a lot in teenagers and college students, who are trying to start to be adults. I tend to be the one who helps facilitate which team they end up seeing.”

While there’s some overlap between the way pediatric and adult orthopedic oncology patients are treated, children have certain unique considerations, Hess noted—“namely, a long life ahead. Sometimes you can make different decisions for someone who’s 70 years old versus someone who’s 7,” he said. “Mostly it comes down to how we choose to get rid of the cancer and keep their limb functional.”

What Hess enjoys most about his role is the continuity of care. Ideally, pediatric sarcoma patients who undergo successful surgeries—often living with metal implants in a limb—need a specialist to monitor and treat them through many decades. Hess is happy to oblige.

“I have patients who had surgery with another surgeon 20 years ago and are now 35, and we’re doing revision surgery together to keep them walking and fully ambulatory,” he said. “You’re the continuity person for these kids when they become adults, because the cancer is gone but they’re still dealing with the repercussions.”

“Every orthopedic oncologist goes into the specialty with the dream of seeing the kids they treated in their first years of practice come back someday having had their own kids,” Hess added. “I don’t think you get to do that in most medical specialties. It’s very exciting.”

Endocrinology

Helping Teens with Diabetes Move to Adult Care

Christy Foster, M.D., leads a new clinic that helps prepare adolescents for the transition to adult care.

By Rachel Arterberry

For adolescents with diabetes, moving from pediatric to adult healthcare can be one of the most vulnerable periods in disease management. Studies have shown that gaps in care often occur during this transition, increasing the risk for complications such as worsening glycemic control and diabetic ketoacidosis.

To address this challenge, Children’s of Alabama recently launched the Bridge Clinic, a dedicated program designed to help adolescents and young adults with type 1 and type 2 diabetes gain the skills and confidence needed to successfully navigate healthcare independently.

The clinic, which officially began seeing patients this spring, provides a structured, multidisciplinary approach to transition planning for patients beginning at age 16 and continuing through their move to adult endocrinology providers.

“We really want to help patients build confidence over a couple of years before they leave pediatric care,” Christy Foster, M.D., assistant professor in the Division of Pediatric Endocrinology and physician in the Bridge Clinic, said. “Our goal is to partner with them so that transitioning into adult healthcare doesn’t feel abrupt or overwhelming.”

The idea for the clinic grew out of a healthcare transition workgroup that has spent several years refining educational tools and identifying ways to improve continuity of care for adolescents with diabetes. Although transition topics are already incorporated into routine endocrinology visits, Foster says the Bridge Clinic offers an opportunity to explore those issues more intentionally and in greater depth.

Patients in the Bridge Clinic continue seeing their primary endocrinologist every three months, while alternating visits with the clinic approximately every six months. During those visits, they work with a multidisciplinary team that includes physicians, diabetes educators, dietitians, and social workers.

One of the clinic’s distinguishing features is its encouragement of adolescents to take a more active role in their own healthcare. Patients are asked to spend at least part of their visits independently with providers, allowing them to practice discussing concerns, asking questions, and making decisions about their diabetes management in a familiar and supportive environment.

“We’re trying to create a safe place where patients can gain skills for navigating the healthcare system while still having the security of their family being involved if needed,” Foster said.

For many patients diagnosed in early childhood, this may be the first time they are expected to discuss concerns directly with their provider, describe their medications, or discuss adjustments to insulin doses without relying on a parent.

The clinic also focuses heavily on practical life skills that become increasingly important as teenagers gain independence. Topics include learning how health insurance works, understanding prescription costs, requesting medication refills, navigating college life, driving safely with diabetes, and managing alcohol use.

Rather than simply providing information, the Bridge Clinic emphasizes hands-on learning.

Patients may be asked to complete “scavenger hunts” between visits to determine the out-of-pocket costs of medications, practice refilling prescriptions, or explore insurance options available through college, employment, or other coverage plans. The team then reviews those experiences during follow-up visits and helps troubleshoot any challenges.

Social workers collaborate closely with families to discuss changes that often accompany young adulthood, including moving into dormitories, entering the workforce, or transitioning to a different insurance plan. Dietitians address healthy habits and nutrition concerns that become more relevant as adolescents begin making more independent choices.

Another key objective of the clinic is to reduce the number of patients who lose care during the transition from pediatric to adult endocrinology.

“We know from the literature that this is a high-risk period for gaps in care,” Foster said. “Anything we can do to help prevent that gap and maintain continuity has the potential to make a meaningful difference.”

As patients approach adulthood, the Bridge Clinic team helps identify an adult endocrinologist, prepares a transition summary letter, and guides patients through establishing care with a new provider.

The clinic currently has the capacity to see approximately 30 patients per session and serves a population of more than 800 patients aged 16 and older with type 1 or type 2 diabetes.

Although the program is still in its early stages, Foster hopes it will become an important resource for families seeking additional support during a period that can feel daunting for both patients and parents.

“This is really about giving young people the opportunity to practice being successful adults with diabetes,” Foster said. “If we can help them gain knowledge, confidence, and independence before they leave pediatric care, we’ve given them a stronger foundation for lifelong health.”