At Children's Mercy, that care spans a continuum that includes ECMO, specialized BPD management and one of the region's largest infant tracheostomy and home ventilator programs. The experience of 23-month-old patient Joshlynn, born at 26 weeks' gestation, who later developed severe cystic BPD, illustrates how those programs work together to support children with the most complex respiratory conditions.

ECMO Expertise for Complex Respiratory Disease

Children's Mercy recently maintained its Platinum Level Center of Excellence designation from the Extracorporeal Life Support Organization (ELSO), the organization's highest recognition for ECMO programs. Across the hospital, approximately 50 patients receive ECMO support each year, including an average of 12 to 15 neonatal patients annually.

The Division of Neonatology includes approximately 42 neonatologists, six of whom serve on the neonatal ECMO team. Working alongside ECMO colleagues across the hospital, these physicians provide specialized consultation, education, quality oversight and around-the-clock support for infants requiring ECMO.

The program has also developed experience caring for infants with severe chronic lung disease and BPD, a population many centers have historically approached cautiously when considering ECMO.

"We've been leaders in saying these children can recover and should be considered rather than excluded," said John Daniel, MD, Associate Medical Director of the NICU and Director of the Neonatal Extracorporeal Life Support Program. “ECMO is an incredibly complex support modality to provide. It is truly a team sport that involves close collaboration with our surgical colleagues. Joshlynn’s case really emphasized the great collaboration we have between our medical and surgical teams. Because of this, we can be truly innovative in our approach to ECMO support.”

That experience became critical in Joshlynn's case. As her severe cystic BPD progressed, large pneumatoceles expanded within her lungs, compressing healthy tissue and creating a situation in which surgery could not safely be performed without additional support. ECMO provided the stability needed for surgical resection of the lesions and time for recovery.

“Joshlynn’s care really reflects the teamwork and trust that goes into caring for a critically ill newborn,” said Rebecca Rentea, MD, MS, MBA, Section Chief, Colorectal and Pelvic Reconstructive Surgery. “Our surgical team worked closely with neonatology throughout her course, including when it became clear that surgical resection of the pneumatocele was needed. These are incredibly complex decisions, and having surgeons, neonatologists, and the rest of the care team working together allows us to determine the best approach for each individual child. It was very rewarding for our team to be a part of Joshlynn’s care and to see how far she has come.

For Joshlynn's family, the procedure represented a turning point in a journey that had included severe lung disease, recurrent NEC and months of uncertainty about what the future might hold.

The Children's Mercy ECMO team also takes an approach that extends beyond life support alone. When clinically appropriate, infants are supported with less sedation, allowing opportunities for physical and occupational therapy, Child Life engagement, feeding experiences and developmental activities while on ECMO. Rather than waiting until ECMO support ends to focus on growth and development, those priorities remain part of care throughout the recovery process. Joshlynn was one of the infants who benefited from that approach during her ECMO course.

Specialized Care for Severe BPD

Following ECMO and surgery, Joshlynn continued her recovery through the Children's Mercy chronic lung disease service.

Children's Mercy is a founding member of the international BPD Collaborative and participates in the collaborative's executive leadership alongside other founding institutions. Through that work, the team helps advance care for infants with severe bronchopulmonary dysplasia while collaborating with programs across the country and internationally.

Led by physicians including Karishma Rao, MD, Medical Director, Chronic Lung Diseases Inpatient Services, the program has some distinctive features.

"We don't treat a child with BPD as simply a bigger premature infant,” said Dr. Rao. “We focus on growth, neurodevelopment and the unique physiologic needs of these children."

Patient mobility, feeding progression and long-term outcomes are also important features of the program. Developmental care is integrated throughout hospitalization, recognizing that these infants have needs that extend far beyond respiratory support alone.

Joshlynn's hospitalization included recurrent NEC, feeding challenges and prolonged respiratory needs. The BPD team's multidisciplinary approach helped coordinate care across specialties while supporting her continued development during a lengthy NICU stay.

Extending Care Beyond the NICU

For many children with severe BPD, discharge marks the beginning of the next phase of care.

Through the Children's Mercy Infant Tracheostomy and Home Ventilator Program, a team of neonatologist and a neonatal nurse practitioner continue caring for many of the same children they treated in the NICU. The program follows one of the region's largest populations of infants and young children with tracheostomies and ventilator dependence, providing ventilator management, feeding support, primary care coordination and multidisciplinary follow-up.

That continuity allows families to remain connected to clinicians who have followed their child's journey from infancy through life at home.

According to Addie Begley, NP, Infant Tracheostomy and Home Ventilator Program, Joshlynn left the hospital fully dependent on ventilator support. Since discharge, she has continued progressing through ventilator weaning while achieving developmental milestones at home. She is now taking independent steps, exploring her environment and showing signs that she may be ready for additional time off the ventilator in the future.

"She's telling us she's ready," said Addie. “She is a remarkable patient with a fantastic mom who has worked tirelessly to help her get where she is today."

A Collaborative Model

Throughout her care, neonatology, ECMO, surgery, gastroenterology, respiratory therapy, developmental specialists, nursing teams and outpatient clinicians worked together to navigate one of the most complex clinical journeys imaginable.

For her mother, Brittany, the outcome remains extraordinary.

"I planned her funeral three times during this journey," Brittany said. "But Joshlynn kept proving everyone wrong."

Today, after 624 days in the hospital, Joshlynn is home with her family after being discharged in May 2026 with a tracheostomy and ventilator support. Through ongoing care with the Children's Mercy Infant Tracheostomy and Home Ventilator Program, she continues progressing through ventilator weaning while reaching developmental milestones that once seemed far out of reach. Active, curious and determined, she remains a powerful example of what can happen when advanced ECMO support, specialized BPD management and longitudinal home ventilator care are connected through a coordinated model designed for children with the most complex respiratory needs.

Under the editorial leadership of Drs. St. Peter and Snyder, the 8th edition reflects the latest advances in pediatric surgical techniques, perioperative care, and clinical decision‑making. Their collaboration on this globally respected resource underscores a shared commitment to advancing excellence in pediatric surgical education and practice, and to shaping the future of care for children worldwide.

Tolu Oyetunji, MD, MPH, MBA, was recently named Division Director, General Surgery, at Children’s Mercy Kansas City. Dr. Oyetunji joined the faculty at Children’s Mercy Kansas City in 2017 after completing his Pediatric Surgery Fellowship training with the Children’s Mercy team.

Dr. Oyetunji is the Thomas Holder and Keith Ashcraft Endowed Chair in Pediatric Surgical Research and the Director of the Surgical Scholars program. Dr. Oyetunji obtained his medical degree from the Obafemi Awolowo College of Health Sciences at Olabisi Onabanjo University in Ogun State, Nigeria. He completed a General Surgery Residency at Howard University Hospital, before coming to Kansas City for Fellowship training. He also holds a Master’s in Public Health from Johns Hopkins University and a Master’s in Business Administration from the University of Warwick, Coventry UK.

“I am excited to welcome Dr. Oyetunji to this leadership position and look forward to continued program growth as we serve the needs of our pediatric community,” said Shawn St. Peter, MD, Chair, Department of Surgery and Surgeon in Chief. 

The Department of Orthopedic Surgery and Musculoskeletal Science at Children’s Mercy Kansas City performs approximately 100 surgeries to improve function for cerebral palsy patients each year, utilizing the single-event multilevel surgery (SEMLS) approach.

SEMLS incorporates several procedures into one surgical intervention. For example, bilateral proximal femoral varus derotational osteotomies are often combined with other lower extremity procedures. Doing so reduces the number of surgeries and hospitalizations for these patients, streamlining their postoperative care, reducing length of stay and helping patients advance to rehabilitation faster.

In pediatric hospitals where the team is highly skilled in SEMLS, outcomes have been very good and patient/family satisfaction superior.

Improving Pain Management for SEMLS Surgery

Epidural catheters are currently the gold standard when cerebral palsy patients undergo bilateral multilevel orthopedic surgery.

However, one of the challenges for those who receive an epidural is that it must remain in place postoperatively, usually for two days. This often requires the patient to be immobile, affecting the physiology of recovery, including lung function and mobility. A longer hospitalization also affects the family dynamic, requiring parents to take more time away from work or other caregiving responsibilities. Additionally, patients may have comorbidities that preclude epidural catheter placement.

This patient population also presents with additional medical challenges, including the fact that many are taking anti-spasmodics, may be on a baclofen pump, or may be on anti-epileptic medications.

To improve upon the patient’s experience, Kathryn Keeler, MD, Children’s Mercy Pediatric Orthopedic Surgeon, and Nichole Doyle, MD, Pediatric Anesthesiologist, collaborated to develop an Enhanced Recovery After Surgery (ERAS) protocol.

ERAS Protocol for SEMLS Patients

The ERAS protocol Dr. Doyle and Dr. Keeler developed is used for cerebral palsy patients undergoing bilateral lower extremity surgeries. 
Key elements of the protocol include:

• Use of peripheral nerve blocks instead of epidural catheters.
• Earlier mobilization of patients, with an earlier start to physical therapy.
• Discontinued use of the Foley catheter before arrival to the post-anesthesia care unit.
• Use of dexmedetomidine infusion for the first postoperative day as part of a multimodal pain management plan.

To determine the effectiveness of the protocol, they performed a pilot study of 10 consecutive cerebral palsy patients undergoing bilateral lower extremity surgery from May to July 2020, comparing them with 10 controls from 2017 to 2019. The groups were matched by Gross Motor Function Classification System (GMFCS) score, procedure performed and age. The biggest difference between the two groups was in the type of pain control used. The control group received epidural catheters.

The ERAS group received peripheral nerve blocks in the operating room with clonidine or dexamethasone added to prolong the blocks based on the surgical procedures planned.

Preoperatively patients were counseled about the protocol and what to expect. Some high-risk patients were started on gabapentin at this visit. On the day of surgery families were instructed to continue clear liquids until two hours before surgery. If gabapentin was not started at the preop visit, patients were given a dose preoperatively.

Intraoperatively, the ERAS patients received intravenous (IV) acetaminophen and ketorolac. They also had intraoperative dexmedetomidine and/or ketamine infusions. A short-acting narcotic was given as needed.

At completion of the surgery the Foley catheter was removed. Upon transfer to the floor, the patients continued on a dexmedetomidine infusion 0.1 mcg/kg/hr-0.2mcg/kg/hour and they were placed on scheduled acetaminophen, ketorolac, gabapentin and a bowel regimen. They received valium, narcotic, ondansetron and diphenhydramine as needed. If needed, a PCA/NCA was started.

Key Outcomes

This pilot study showed that following an ERAS protocol can help minimize the variation of care and enhance the patient and family experience with bilateral lower extremity surgery. Results showed a decreased length of stay of almost a full day and a reduction in postoperative narcotic consumption for the ERAS group. Side effects such as nausea, vomiting and pruritus also decreased in the ERAS patients.

Overall, performing single-shot peripheral nerve blocks at the beginning of the surgery has the potential to substantially increase the value of care delivered to this complex patient population, but further study in a larger patient population is needed to confirm results.

ERAS Pilot Study Highlights

• 10 ERAS protocol patients; 10 control group patients.
• GMFCS 4 for both groups.
• Decreased postoperative narcotic use in ERAS group to 0.12 morphine equivalents/kg per day compared to 0.19 morphine equivalents/kg in control group.
• Postoperative need for a PCA/NCA pump was zero in the ERAS group compared to four in the control group, two of which occurred after discontinuation of the epidural catheter.
• Time to postoperative discharge from physical therapy was 1.70 days in the ERAS group versus 2.44 days in the control group.
• Hospital length of stay was 2.20 days for the ERAS group versus 3.0 days in the control group.

Collaborate with us to study the ERAS protocol

Children’s Mercy is seeking to study the ERAS protocol in a larger patient population by collaborating with other pediatric institutions performing single-event multilevel surgeries for cerebral palsy patients. To work with our team, contact:

Kathryn Keeler, MD, Pediatric Orthopedic Surgeon 
kkeeler@cmh.edu

(816) 234-3696

Nichole Doyle, MD, Pediatric Anesthesiology 
nmdoyle@cmh.edu

(816) 234-3464

For consults, admissions or transport call: 1 (800) GO MERCY / 1 (800) 466-3729.

Reference:

1. Schendel DE, et al. (n.d.). Public Health Issues Related to Infection in Pregnancy and Cerebral Palsy. PubMed - NCBI. National Center for Biotechnology Information. Retrieved 9/18/2020 from: https://www.ncbi.nlm.nih.gov/pubmed/11921385.