Exploring the lived experiences of parents caring for infants with gastroschisis in Rwanda: The untold story

Pediatric surgery is a crucial pillar of health equity but is often not prioritized in the global health agenda, especially in low-and middle-income countries. Gastroschisis (GS) is a type of structural congenital anomaly that can be treated through surgical interventions. In Rwanda, neonatal surgical care is only available in one hospital. The experience of parents of children born with gastroschisis has not been previously studied in Rwanda. The objective of this study was to explore the lived experiences of parents of children diagnosed with GS in Rwanda. A qualitative study using a semi-structured interview guide was conducted. Parents who had children with gastroschisis and were discharged alive from the hospital in Rwanda were interviewed by trained data collectors, from May to July 2021. Data were transcribed, translated, and then coded using a structured code-book. Thematic analysis was conducted with the use of Dedoose software. Sixteen parents participated in the study. Five themes emerged from the data. They were: “GS diagnosis had a significant emotional impact on the parents”, “Parents were content with the life-saving medical care provided for their children despite some dissatisfaction due to the delayed initiation of care and shortage of medications”, “GS care was accompanied by financial challenges”, “support systems were important coping mechanisms” and “the impact of GS care extended into the post-discharge period”. Having a newborn with GS was an emotional journey. The lack of pre-knowledge about the condition created a shock to the parents. Parents found support from their faith and other parents with similar experiences. The experiences with the care received were mostly positive. The overall financial burden incurred from the medical treatment and indirect costs was high and extended beyond the hospital stay. Strengthening prenatal and hospital services, providing peer, spiritual and financial support could enhance the parents’ experience.

Outcome of management of gastroschisis: comparison of improvised surgical silo and extended right hemicolectomy

Gastroschisis is onea of the major abdominal wall defects encountered commonly in pediatric surgery. Whereas complete reduction and abdominal closure is achieved easily sometimes, a daunting situation arises when the eviscerated bowel loops and other viscera cannot be returned immediately into the abdominal cavity. This situation is a major contributor to the outcome of the treatment of gastroschisis in our region. In our efforts to improve our outcome, we have adopted the technique of extended right hemicolectomy for cases where complete reduction and primary abdominal wall closure is otherwise not possible. This study compared the management outcome of gastroschisis using our improvised silo, and performing an extended right hemicolectomy.

Results
Thirty-nine cases were analyzed. Simple closure could not be achieved in 28 cases. In the absence of standard silos, improvised ones were constructed from the amniotic membrane (3 cases), urine bag (4 cases), and latex gloves (9 cases) giving a total of 16 cases managed with silos. Extended right hemicolectomy was performed in 12 cases.

Conclusions
Given the peculiarities of circumstances in our region regarding human and material resources in the care of gastroschisis patients, an extended right hemicolectomy, to make it possible to close the abdomen primarily in gastroschisis is a more viable option than the use of improvised silo.

Reducing Gastroschisis Mortality: A Quality Improvement Initiative at a Ugandan Pediatric Surgery Unit

Introduction: With modern treatment, survival of gastroschisis exceeds 90% in high-income countries. Survival in these countries has been largely attributed to prenatal diagnosis, delivery at tertiary facilities with timely resuscitation, timely intervention, parenteral nutrition and intensive care facilities. In sub-Saharan Africa, due to lack of these facilities, mortality rates are still alarmingly high ranging from 75 to 100%. In Uganda the mortality is 98%.

Aim: The aim of this study was to reduce gastroschisis mortality in a feasible, sustainable way using a locally derived gastroschisis care protocol at a referring hospital in Western Uganda.

Methods: Data collection was performed from January to October 2018. Nursing staff were interviewed regarding the survival and management of gastroschisis babies. A locally derived protocol was created with staff input and commitment from all the team members.

Results: Four mothers absconded and 17 babies were cared for using the newly designed protocol. Seven survived and were well at one month post discharge follow-up, reducing the mortality for this condition from 98 to 59%.

Conclusion: A dedicated team with minimal resources can significantly reduce the mortality in gastroschisis by almost 40% using a locally derived protocol.