Siamese II
There are so many thoughtful, excellent comments to my previous post (Siamese, March 30), that I thought it best to answer in a new post rather than the comments section. Several people asked, rightly, for more information. I can give a little more, but this happened a long time ago, in the late 80's, and frankly I don't remember everything. It was certainly our policy and practice at the time (and still is) to discuss these situations with parents, before delivery if possible, otherwise after delivery, but for the life of me, I cannot remember these parents. I'm sure that I or a partner would have discussed this with them prenatally if given the opportunity.
For purposes of discussion, let's divide babies born with anomalies into three categories:
1. Babies whose anomalies are so mild that there is no question they should be resuscitated. An example might be a baby with gastrischisis (intestines outside the body) but no other problems, or a baby with Down syndrome.
2. Babies with anomalies that are such that it makes it questionable whether to resuscitate them or not. I think most would agree that physicians and parents alike should participate, if possible, in the decision to resuscitate.
3. Babies with anomalies so severe that they clearly should not be resuscitated. This implies that the anomalies are bad enough that treatment would be futile or prolong suffering. An example would be a baby with anencephally (no skull or brain). Personally, I would include babies with Trisomy 13 or 18 in this category.
These conjoined twins were either in category two or three. We knew before delivery that they were conjoined but weren't sure how bad they would be. Again, I don't remember how the pre- delivery discussion with the parents went, but please realize that, although theoretically a joint parental/physician decision should be made, in practice that can be very difficult. There might not be time prenatally to have a full discussion. Even if there is, through no fault of anybody, it can be extremely difficult for parents to grasp the situation. Every thing about the case is new or foreign to them, and they are not used to even discussing these life or death issues, let alone deciding them. Also, information is often incomplete.
In the case of these twins, I do not recall a clear directive from the parents either way, plus we did not have enough information before birth to fully know the extent of the defects. So, immediately after birth, I had a choice: do nothing; resuscitate and do everything possible for these babies; or resuscitate and then discuss it with the parents, knowing that we could withdraw life support if we decided to later on. (Ethically, withdrawing life support and not starting it are considered equivalent. Practically, parents don't always see it that way.) If I thought the twins fit into category two (of the categories in the second paragraph), the right choice would be the last one, resuscitate and discuss later. If I thought the twins fit into category three, then the right choice would be to leave them alone.
I had to make a quick decision about the babies' category. Bear in mind that I probably couldn't have intubated them (put a breathing tube into their windpipes) even if I wanted to because of their chin and partial face fusion. Bear in mind that they were conjoined from the face to a long way down the torso. Bear in mind that they were 13 weeks premature before the era of artificial surfactant, and even if they were not conjoined and had no anomalies the chance of both surviving would have been less than 50%. Bear in mind that a picture of these twins - not available - would be worth at least a thousand words to those curious about, and perhaps second guessing, my decision.
I decided they were category three, did not resuscitate them, and did not really lose any sleep over the decision. I don't say that pompously or because I take the decision lightly. It's just that based on my experience and knowledge base, they fit that category. And like it or not, for better or for worse, it's part of a neonatologist's job to make those kinds of decisions.
We could talk about this a long time, but I've already exceeded my preferred post length of three to five paragraphs. Thanks to everyone for your past, and perhaps future, comments.
For purposes of discussion, let's divide babies born with anomalies into three categories:
1. Babies whose anomalies are so mild that there is no question they should be resuscitated. An example might be a baby with gastrischisis (intestines outside the body) but no other problems, or a baby with Down syndrome.
2. Babies with anomalies that are such that it makes it questionable whether to resuscitate them or not. I think most would agree that physicians and parents alike should participate, if possible, in the decision to resuscitate.
3. Babies with anomalies so severe that they clearly should not be resuscitated. This implies that the anomalies are bad enough that treatment would be futile or prolong suffering. An example would be a baby with anencephally (no skull or brain). Personally, I would include babies with Trisomy 13 or 18 in this category.
These conjoined twins were either in category two or three. We knew before delivery that they were conjoined but weren't sure how bad they would be. Again, I don't remember how the pre- delivery discussion with the parents went, but please realize that, although theoretically a joint parental/physician decision should be made, in practice that can be very difficult. There might not be time prenatally to have a full discussion. Even if there is, through no fault of anybody, it can be extremely difficult for parents to grasp the situation. Every thing about the case is new or foreign to them, and they are not used to even discussing these life or death issues, let alone deciding them. Also, information is often incomplete.
In the case of these twins, I do not recall a clear directive from the parents either way, plus we did not have enough information before birth to fully know the extent of the defects. So, immediately after birth, I had a choice: do nothing; resuscitate and do everything possible for these babies; or resuscitate and then discuss it with the parents, knowing that we could withdraw life support if we decided to later on. (Ethically, withdrawing life support and not starting it are considered equivalent. Practically, parents don't always see it that way.) If I thought the twins fit into category two (of the categories in the second paragraph), the right choice would be the last one, resuscitate and discuss later. If I thought the twins fit into category three, then the right choice would be to leave them alone.
I had to make a quick decision about the babies' category. Bear in mind that I probably couldn't have intubated them (put a breathing tube into their windpipes) even if I wanted to because of their chin and partial face fusion. Bear in mind that they were conjoined from the face to a long way down the torso. Bear in mind that they were 13 weeks premature before the era of artificial surfactant, and even if they were not conjoined and had no anomalies the chance of both surviving would have been less than 50%. Bear in mind that a picture of these twins - not available - would be worth at least a thousand words to those curious about, and perhaps second guessing, my decision.
I decided they were category three, did not resuscitate them, and did not really lose any sleep over the decision. I don't say that pompously or because I take the decision lightly. It's just that based on my experience and knowledge base, they fit that category. And like it or not, for better or for worse, it's part of a neonatologist's job to make those kinds of decisions.
We could talk about this a long time, but I've already exceeded my preferred post length of three to five paragraphs. Thanks to everyone for your past, and perhaps future, comments.
posted by neonataldoc at 10:58 AM
4 Comments:
ND, I didn't take issue with your decision not to intubate, I took issue with your characterization of their deaths as peaceful.
Nevertheless, I understand the impulse that causes you to use such a term. I'm a doc, too.
Problem is, our protestations and twiddling of the language notwithstanding, death often is not peaceful.
I fear that agonal breathing feels as unpleasant as it looks.
best,
Flea
Flea, I think you are correct. I don't know if the deaths were peaceful. They were quiet; maybe it's my wishful thinking that made me describe them as peaceful.
Hmmm, for what it's worth, I really do think babies can have peaceful deaths.
Most recently I had a homeborne baby we knew prenatally (MFM workup) to be 'incompatible with life'. (What a terrible term, by the way). He was an EVC dwarf with hypoplatic lungs and no kidneys, among other problems. He lived six hours. Most of the time with a heart rate less than 70 and a resp rate under 10. No agonal breaths (probably not enough lung tissue) just peeps. I watched him the whole time, in his families arms, and I swear it was peaceful.
I also watched over at least a dozen preemies born in rural SE Asia, born with no chance for survival, and I feel the same.
I'm hoping, like NeoDoc, that it's not just our projections. But I would guess agonal does not equal painful because it also means hypoxic, and therefore, 'loopy'. And hopefully peaceful.
Interesting to think about though, thank you...
Nice! Yeah yup asmallpart of this is prob part of advancedcnatraining.com but I partially agree with your approach.
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