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.

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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.

Frank Lu 11:26 pm on June 9, 2020

There are many challenging issues to discuss, including whether you would perform resection of the ischemic bowels, put a drainage tube, or just open close, and also have to be careful that trying hard to push back the GI tract into the abdomen and close the abdomen wall may cause breathing difficulties, pain and infection. Many times we would provide TPN for the infant at the beginning, and many times because the baby has good neurological responses, our medical team and the family would ask for continue of TPN. I think the palliative teams needs important discussions with the primary care team and family for ACP. We would allow the option of not using IV fluids or TPN, but usually it is hard for the family to choose. So the most common condition is repeat infections due to TPN using central catheters, and finally maybe septic shock is the terminal event. So the palliative care team works together with the primary Pediatric GI specialty team for chronic care. And the DNR discussion is relatively late, more frequently till more critical condition such as shock has been noted, but in recent years after more palliative care involvement, the situation is improving as we tried to discuss it more earlier, it would depend on the family’s thoughts, attitude, and willingness for discussion, and it is getting some improvement.

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leeaii 8:38 pm on June 10, 2020

Thanks Grace for sharing this case. There is quite a bit to consider.

Firstly with an antenatal diagnosis, preparing parents for the possible decisions to be made at birth or soon after and a shared birth plan might be useful to ensure everyone is on the same page at delivery; parents, OT staff, obstetrics and paeds.

Preparation for discharge, if these parents wanted to bring their baby home immediately. I would explore further the reasons fro their decision and what they understood and expected about care at home, what did they expect care would involve (is this their first child?, their experience in care of a newborn) and the social and physical support that they would receive. If they are unsure or ambivalent, I would encourage they take a little more time as palliative care can be provided in the hospital too. Exploring too if their needs could actually be met in hospital or hospice is available.

(We have a similar baby with microcolon syndrome at the moment and after the first discussion, mom felt she wouldn’t be able to manage the OGT and urinary catheter at home. The tubes “scared” her.)

Either way, health care providers should give information on symptoms to expect, as there is minimal viable gut, feeding and absorption of EBM may not be much. Hypoglycaemia and seizures could be expected, dehydration, Infective process at the umbilicus perhaps. Hypothermia (baby is probably <1.8 kg at discharge), thrombophlebitis from the morphine line. Practically, what would they do if NGT slipped out and how to care for the IV line. Oral sucrose used for pain may supplement the minimal oral feeds. I would be wary of the the IV infusion at home though but it is there specifically for symptom management?

Ethically, TPN/fluids would sustain life since the baby can’t feed but at what cost, consideration is not monetary only. Best interest standards and harm principle will be helpful in the decision making. The burden from interventions must not outweigh the desired benefit to the baby and family. Unbiased honest information is important for shared decision making. Central line access for TPN has it's own challenges and the morbidity and complications associated with long term TPN need to be considered.

Don’t know enough about neonatal organ donation from a premature 1.8kg baby in Malaysia. Would find out more before considering to approach the parents.

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Marianne 5:04 pm on June 11, 2020

Good day!
I am learning a lot from the discussions already posted and from this case. Thank you for this. 🙂

I agree to have a multidisciplinary meeting antenatally and include the parents. The goals of this meeting would be (1) identify problems and solutions to these problems or the next steps to take (2) explore the psychosociospiritual status of the parents before and upon diagnosis and identify possible issues on and after delivery with regards this aspect of care (3)prepare advance care plan (4) identify things that can be done to make the most out of each minute, hour and day the family has with the baby so that no matter what the outcome maybe or their choices may be, quality of life is maintained not only for the baby but also of the family members (i.e. collecting memories such as footprints, photos, etc. as is being advised by some comfort care articles and videos, giving the sacraments of baptism / doing religious practices and etc.).

once the baby is born, we would be carrying out the things we have agreed with the parents and meetings can be continued to check on how they feel, what they think and etc. if we do it antenatally, we hope we have built a good rapport with the family that sensitive topics would be more bearable to discuss. this also helps the doctors and staff prepare themselves as they are often also affected with losing babies or getting frustrated if they can do nothing to keep the baby alive.

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pohhengc 10:07 pm on June 14, 2020

Dear colleagues,

Thanks Marianne for sharing your thoughts. You approach is most logical. I particularly like your suggestion to “make the most out of each minute, hour and day”. Complex clinical issues and diverse professional opinion can sometimes distract us from seeing the need for parents to make memories as the little baby’s life comes to a premature close.

Indeed Frank! Issues around hydration and nutrition are often contentious. If unresolved, they can have adverse consequences, including causing the death of the child as you cited. Luckily for us in this case, the parents, neonatologist and the palliative care team are aligned.

Lee Ai, we managed to speak with parents (albeit virtually) prior to the baby going home. Hopes and reasons for bringing the child home for end-of-life care were shared with the healthcare team. In some ways, I like to think that through the brief introduction, parents felt more assured. Lots of coordination between the hospital team and ourselves as community palliative care providers followed. At the end of the day, I believe the baby’s parents are the heroes. And they should be very proud of themselves.

Poh Heng

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Terminal Discharge of newborn baby boy with antenatally diagnosed gastroschisis

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