Terminal Discharge of newborn baby boy with antenatally diagnosed gastroschisis

Hello everyone! We hope you are all keeping safe during this period. The Special Interest Group case discussion forum is still accepting case studies; if you wish to submit a case study, please do contact us!

The second case study is once again presented by Dr Grace Ng from HCA Star PALS.

Transcript from the presentation

Hi everyone, welcome back to our children’s palliative care special interest group case presentations. I’m Dr Grace Ng from HCA Hospice Care, Singapore.

Our case for discussion today is Patient A, a newborn boy with antenatally diagnosed gastroschisis, the first child to a set of non-consanguineous parents. The growth scan at a gestation of 22+4 weeks showed a very significant portion of the gut was out of the abdominal cavity. Parents were counseled by the pediatric surgeons regarding the diagnosis and possible outcomes, and parents decided to continue with the pregnancy, hoping that the child’s condition would be operable after birth.

In terms of the birth history, Patient A was delivered via emergency LSCS at 34 weeks gestation due to premature prolonged rupture of membranes with persistent contractions. A course of dexamethasone was completed. The baby was vigorous at birth with an APGAR score of 9,9. Gastrochisis was confirmed as examination revealed an abdominal wall defect with evisceration of bowel. The baby’s birth weight was 1.8kg.

Patient A underwent emergency exploratory laparotomy at 6 hours of life. Intra-op findings revealed a complete midgut strangulation from the third part of the duodenum (D3) to the distal transverse colon. The exteriorized bowel was ischemic and non-viable. Proximally there was a distended stomach and megaduodenum, and distally, there was 10cm of colon leading to the rectum. This was deemed a non-viable configuration and patient was not a candidate for gut transplant, hence decision was made by the surgical and neonatal teams for palliative management. The extruded bowel was reduced into the abdomen with fascia closure.

Parents were counseled regarding the poor prognosis, ranging from days to short weeks and though grieving this outcome, they were accepting and agreeable with palliative management. They wanted to bring their baby home. The pediatric palliative home care team was activated to support this family at home.

Upon discharge on day 4 of life, patient A was alert and opening eyes, comfortable on IV morphine infusion of 4 mcg/kg/hr. He was kept nil by mouth, except for small amounts of colostrum for comfort. He had a nasogastric tube in situ, which was being aspirated 4 hourly, yielding 1-2ml of billous contents. Patient A’s abdomen was soft, not distended and non tender. The surgical wound site was clean with small amount of clear discharge from the umbilicus. There were no other congenital abnormalities.

For this case, I would like to post up the following questions for discussion.

  • Firstly, how would you prepare for this baby’s terminal discharge?
  • What symptoms would you anticipate for, and how would you manage them?
  • How would you prepare and support the family and healthcare providers for these possible scenarios?
  • Are there any special considerations when providing palliative care for premature babies?
  • What are some ethical issues to consider in this case? For example, would you consider continuation of IV fluids or TPN at home? Is it appropriate to approach these parents regarding organ donation?

Please feel free to also share any of your experiences in managing such similar cases!

Thank you for your kind participation and we hope to hear from you soon!

Please do share your thoughts in the comments section below! We will share the experiences of the Star PALS team managing this case in next month’s post.