While limited in number (n = 9), we believe the outcomes of this program have been excellent. It is unlikely that the patients would have received adequate multidisciplinary care in their resource-limited home country, given the well-documented limited availability of subspecialized pediatric surgery services in Belize and St. Lucia. Given these circumstances and the reported mortality rate of 61% without modern surgical intervention, we suspect that the value of this collaboration has been immense in improving the life expectancy of these patients [5].
Though definitive repair of EA and TEF during the index surgery is preferred, this approach is not ideal for patients at a facility overseas due to the possibility of significant delays before transfer. Our outcomes suggest that staged repair of EA and TEF is safe and feasible for these patients. The gastrostomy tube allows for decompression of the stomach and prevents aspiration while the logistics are being set up for the patient to be transferred. It is a procedure that the general surgeons in these countries feel comfortable performing; however, there have been complications from the gastrostomy tube placements. One patient required an additional surgery for stomach dehiscence at their native country while 2 were diagnosed with cellulitis that was treated with antibiotics.
Despite these complications, all patients had a good outcome after the repair of their EA and TEF. There was only 1 postoperative complication (empyema), which was managed conservatively during the same admission. As a surveillance for complications, all patients stayed at a nearby hospitality house for at least few weeks of follow up with their primary surgeons before returning to their home countries. Major outcomes such as mortality, postoperative nutritional status and overall length of stay were excellent.
We want to highlight the importance of postoperative nutrition for these patients. The gastrostomy tube initially placed for decompression in these patients was used for enteral access as the patients learned oromotor skills; in fact, some of the patients were able to be transferred back home while still dependent on tube feed because they had a stable enteral access. At this point, all patients are on a regular PO diet without TPN dependence. This is critical for these patients as their home conditions are not conducive to care for central line access and TPN.
Given the risk of anastomotic stricture after this type of surgery, it is imperative that WPP patients have long term follow up. As a result, there has been an extensive effort to provide responsible follow up care. All patients stayed in Richmond for at least a few weeks to receive outpatient care from specialists until cleared by the team. Once home, the visiting surgical teams from our institution and the local physicians provided follow up care for all of these patients. The length of follow up varied based on their progress; we have followed up with patients up to 8 years after discharge. None of the patients have required readmission to their local hospital or CHoR for further care but this can be arranged by WPP, if needed.
The partnership with WPP has been invaluable in the coordination of care for these patients. They provide essential logistical support in caring for pediatric surgical patients from Belize and St. Lucia in the identification as well as triage of patients. They have a strong relationship with the pediatricians from these countries and serve as a bridge between the primary care physicians and the specialists here at CHoR. Time is of essence in treating this condition as malnutrition may quickly result in mortality. In this program, the median age of the transferred patient was 3.1 weeks. The patient with the jejunostomy tube was an outlier (21.1 weeks at the time of transfer) as he had stable enteral access and could be transferred after recovering from a prolonged illness due to pneumonia and sepsis. This highlights the agency’s efficiency in organizing the triage and transfer of the patient. WPP can arrange the logistics of travel for both the patient and the guardian and allow the guardian to stay with the patient until they are medically cleared to return to their home country. After discharge, WPP continues to follow the patients and arrange for longitudinal follow ups.
This program will continue to evolve; for example, routine jejunostomy tube placement is now being considered before transfer to CHoR. The gastrostomy tubes placed at the OSH are used for decompression as these patients are prone to life threatening aspiration events via the fistula. There was one patient who had a jejunostomy tube placed in addition to the gastrostomy tube; he was able to avoid a prolonged period of TPN as he had stable enteral access throughout his hospital stay. We propose that the addition of a jejunostomy tube before transfer would provide essential enteral nutrition while reducing potential complications of TPN and central lines.
Limitations
We recognize the importance of building a sustainable surgical capacity in these countries. In addition to providing medical care, surgery teams from WPP travel to these countries to provide important surgical education for the local general surgeons. However, surgical education is not the only hindrance to countries with limited resources; these countries often lack other essential resources such as ICU support, pediatric anesthesiology and pediatric nursing. As a result, building surgical capacity to a self-sustainable level will be a long and arduous process. There are currently capacity building efforts underway to support the development of advanced pediatric services in Belize including comprehensive neonatal care, a NICU training program and a pediatric anesthesia training program.
Meanwhile, the need for complex medical care continues to exist and this program aims to address this need. WPP relies on its referral process with local pediatrician partners to identify those children for whom there is a not an option for local care. WPP explores every local and regional resource within its network’s capacity at the time of the child’s referral before referring to its U.S. partners. We highlight this program not as a solution to end the global healthcare disparity but as an adjunct to address the dire situation of those whose lives are in danger without intervention. In December of 2020, the first case of EA and TEF repair in Belize was performed by a volunteering Cuban surgeon and we believe it needs to become the standard of care for these patients [15].
We also acknowledge that this study only highlights single institutional experience. WPP’s model for mobilizing children to advanced centers for critical care is increasingly focused on growing a network of partnerships that allow children to be treated closer to home. Dozens of children with high-acuity surgical needs in various medical specialties receive care through regional partnerships in Latin America and the Caribbean each year through the WPP network. This network currently includes advanced referral centers in the Cayman Islands, Barbados, Martinique, Mexico, Colombia, Honduras, Guatemala and the Dominican Republic. This paper is a limited review of select cases that were brought to one partner U.S. hospital system. WPP’s program model employs different modes of service delivery in response to the needs expressed by the partners in the countries where WPP works.
Lastly, another limitation in this study is that there are likely patients with this condition who may not have survived before referral to WPP. WPP’s system of patient intake and placement should not be misunderstood as a complete system of surveillance for the incidence of EA with TEF in the countries where WPP works. To our knowledge, since the inception of this program, there was one patient who passed away from hypoxia before being referred to CHoR in March 2012. We did not include this infant in our study due to lack of clinical documentation regarding the circumstances of the mortality. We emphasize the importance of building capacity in these countries while providing much needed medical care of these neonates.