Female Patient 5 Days Old Transferred from Another State with Bilious Emesis

Case Summary

• 5-day-old, female patient, transferred from another state with bilious emesis
• Underwent laparoscopic leveling biopsies and ileostomy on day of life 10
• At 15 days post-op:
  • Did not tolerate feeds
  • No stoma output
  • No successful irrigations from rectum nor from ileostomy
• Diagnosed with total intestinal aganglionosis
  • Stoma creation at 15 cm from ligament of Treitz
  • Later had a G tube insertion
  • Patient is a Jehovah’s Witness and has chronic kidney disease (single hypoplastic right kidney)

Takeaways

• Challenges:
  • Chronic need for total parenteral nutrition
  • Jehovah’s witness: no blood transfusions
  • Not a candidate for kidney transplant only due to incapacity to absorb oral immunosuppression
  • Long-term possible options: multi-visceral transplant (kidney and intestine)
• Importance of Palliative Care
  • Not just end of life or hospice
  • Extra layer of support for patients and families with life limiting or life altering diagnosis
  • Advanced symptom management
  • Help to prepare for the future
  • Ensure goal concordant care
• Skills all surgeons should possess:
  • Being able to elicit goals of care
  • Being able to assess symptom burden
  • Being able to ensure good transitions of care

AMERICAN COLLEGE OF SURGEONS Statement of Principles of Palliative Care