Case discussion: bloody stools and abdominal distension

[J-Rad]

My recent experience (in our NICU) was the parents were right outside the door (there wasn't enough space in the room with all the equipment and personnel). They watched meds, chest compressions, surgical decompression of the abdomen (obscured by the surgeons back), and everything else. I didn't ask their opinions but I think they got to see how sick their child was and how vigorously the team was trying to save his life. I've become a proponent of this structure during codes.

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[oldbearprofessor]

How do you guys feel about allowing parents who want chest compressions to stay in the room during a code? I'm seeing more of that 'open unit' mentality, especially in some PICUs. It seems to me that when parents see first hand the brutality of chest compressions and the torture that can be a code situation, they're more likely to get what's going on.

Needs to be individualized, but generally is a good idea. Same thing with DR resuscitation.

 

[swim2006]

The neonatology team has to make a few phone calls and discuss some things with the family and others. What are some of their responsibilities at this point?

So I know that I will be missing somethings
Some of the phone calls would be to the mother's OB, possibly her PCP, the baby's PCP is they had designated one by that point. I also know that calls have to be made to the hospital administrator and medical examiner but those can frequently wait until after the family leaves (at least from what I have seen). The social worker should also be called and any religious leader if the family wishes.

Things to discuss with the parents:
What to expect once the baby has been extubated (the heart will beat for sometime and the baby will try to breathe), eventually a discussion about whether they want an autopsy, and what type of arrangements for the body. I think another responsibility for the medical team is to be around and check in through the process after withdrawal of care to indicate to the family that their baby is still important and so are they but to allow them "family time" as well.

I am sure I missed several other things so I will rely on the wiser 3rd and 4th years and residents.

 

[oldbearprofessor]

So I know that I will be missing somethings
Some of the phone calls would be to the mother's OB, possibly her PCP, the baby's PCP is they had designated one by that point. I also know that calls have to be made to the hospital administrator and medical examiner but those can frequently wait until after the family leaves (at least from what I have seen). The social worker should also be called and any religious leader if the family wishes.

Things to discuss with the parents:
What to expect once the baby has been extubated (the heart will beat for sometime and the baby will try to breathe), eventually a discussion about whether they want an autopsy, and what type of arrangements for the body. I think another responsibility for the medical team is to be around and check in through the process after withdrawal of care to indicate to the family that their baby is still important and so are they but to allow them "family time" as well.

I am sure I missed several other things so I will rely on the wiser 3rd and 4th years and residents.

You got most of it.

After withdrawing the ETT and turning off the monitor, the baby needs to have frequent auscultation. This can seem intrusive and sometimes it is, but it also is a chance to make sure the family is doing okay. In a case like this, the time from withdrawal of care to death will be minutes. In other cases it can be hours. If it is going to be longer than that, hospice care (including in-hospital hospice) need to be considered.

The physician (can be the intern) needs to document the time of death and of course, let the family know when they can't hear a heart beat anymore. A note in the chart needs to be written.

Phone calls at this point go to:

1. Referring pediatrician
2. Referring OB when known
3. Medical examiner
4. Lifegift (this actually should be done prior to death, but in cases like this, that won't happen).

In due time, the family needs to be asked about an autopsy. In my experience, the best time to do this is about 15-30 minutes after the baby has died, after the initial grieving but before they are leaving or moving on to funeral planning.

The family will need to indicate a funeral home, although this issue is usually handled by the nursing staff.

If an autopsy is agreed to, the appropriate paperwork needs to be completed and contact information obtained directly by the physician (ideally) and the family told when to expect autopsy results (full results generally take several months). An in-person (offer this at least) meeting with the family to review the autopsy results is standard and appropriate.

The chart should be properly completed and the death summary dictated as soon as possible.

The attending will be responsible for the death certificate. Different states handle this differently, but in general, this needs to be done within a few days of the death.

 

[oldbearprofessor]

The preliminary autopsy report is available 48 hours later. Gross findings are consistent with the clinical course known. A large cerebral hemorrhage and extensive damage to the cerebral cortex is found. No viable bowel is identified.

The complete autopsy report is available 2 months later. At the family meeting, the parents have two questions for you after you've reviewed the autopsy with them.

1. Is it our fault that we didn't have enough breast milk for our baby and he had to get infant formula (they have read that formula feeding is associated with NEC).

2. What about a next baby? Are we at risk for recurrence? Should we go to see a special obstetrician?

Note that, in my experience, these autopsy discussions are very positive experiences for everyone. Parents come with questions and have insights they didn't have at the time you met them. They are not angry (in my experience) but simply want a clear understanding of what happened. They virtually ALWAYS ask something related to question #2 above.

What do you say to the parents?

Then we'll move on to a discussion tomorrow about prevention of NEC. Feel free to post what you know or want to know. I'll address the probiotic issue from a while back.

 

[Dimoak]

The preliminary autopsy report is available 48 hours later. Gross findings are consistent with the clinical course known. A large cerebral hemorrhage and extensive damage to the cerebral cortex is found. No viable bowel is identified.

The complete autopsy report is available 2 months later. At the family meeting, the parents have two questions for you after you've reviewed the autopsy with them.

1. Is it our fault that we didn't have enough breast milk for our baby and he had to get infant formula (they have read that formula feeding is associated with NEC).

2. What about a next baby? Are we at risk for recurrence? Should we go to see a special obstetrician?

1.) It is definitely not their fault due to the baby needing formula. While there is some research out there suggesting that infant formula may contribute to the development of neonatal NEC (mostly due to IgA deficiency), there are many trials underway investigating this. The use of formula would have been at best a down-the-list collaborator, and not the cause of the disease.

2.) I would recommend seeing an Obstetrician experienced in high-risk pregnancy. Based on the available literature, the best way to prevent such a tragedy is to carry the child to full term; an obstetrician skilled at facilitating full gestation will provide the best chances of giving birth to a healthy baby.

 

[oldbearprofessor]

1.) It is definitely not their fault due to the baby needing formula. While there is some research out there suggesting that infant formula may contribute to the development of neonatal NEC (mostly due to IgA deficiency), there are many trials underway investigating this. The use of formula would have been at best a down-the-list collaborator, and not the cause of the disease.

2.) I would recommend seeing an Obstetrician experienced in high-risk pregnancy. Based on the available literature, the best way to prevent such a tragedy is to carry the child to full term; an obstetrician skilled at facilitating full gestation will provide the best chances of giving birth to a healthy baby.

I may get delayed a bit adding much to the prevention issue. In general, the use of human milk has been shown to decrease the incidence of NEC. BUT, the majority of mothers will not produce enough volume to meet their infant's needs no matter how hard they try. This is hardly their fault. Although some would use donor milk, this is not common at 33 weeks. In other words, they did their best. Use of IgA, probiotics, etc to prevent NEC are still being studied.

As far as a high-risk OB (perinatologist), I get asked this all the time. In general, I recommend they consider seeing one if they ask, but most of the time this will be for a consult and may not be for full obstetric management.