I just realized what is making me mad about this case. They aren’t just seeking a second opinon. They could go to the nearest university town with a fairly large medical center, and get a second opinon. Yes, the local hoisptial may not deal with cases of this type every day. However this isn’t super rare. (eg due to some poorly documented brain abnormality or some rare syndrome) They do NOT need a world reknown doctor. Actually, why can’t the docs in town send the baby’s MRIs to the world reknown doctors? Honestly, seeing the baby in person isn’t going to be much. Babies with things like hydranencephaly, (no higher brain, just two sacs of fluid) holoprosencephaly (failure of forebrain to develop) and other profound brain abnormalities can do things like blink and even move a bit. Actually can’t babies with anacephaly move a bit before they die? As I said before, I really do feel for the parents. But I do have to say I think they are SEVERELY in denial, and they also don’t realize what they are taking on if the baby lives. I wonder if they are the type of extreme Christians who believe that using leftovers from IVF= murder.
Here’s the problem, it seems to me. If you are just a regular person, and doctors say to you that your baby will never be able to do something – will fail to thrive, will not gain weight, will not be able to move voluntarily, will not respond to your voice – and your baby then does that thing, even in very small degree, then you might be tempted to begin to believe that the doctors are wrong and start to hope for a miracle. I do not think this requires any unusually intense faith. I think many people who find themselves in frightening and intense life and death circumstances turn to magical thinking of one kind and another – possibly you are familiar with the expression that there are no atheists in foxholes,
The child is continuing to develop, where they were told he would not. Or they believe they were told that, one of the more interesting things I have had to do a lot of in my life is to ask people what their doctors told them and compare that with the medical record. Either a lot of doctors lie or people simply interpret what they hear rather differently than it was meant under stress. I suspect the latter.
In any event, so long as he continues to develop against the odds, the impulse to keep him alive will be for most people almost irresistible. And no one can tell them when this will stop. What the hospital knows but probably cannot say is that his continuing to develop may be the problem from their perspective – at some point taking him off the respirator will not cause him to die. As in this case.
In going to the world renowned, they are (all of them, not just the parents) seeking certainty where none can be found. No one knows what the human brain is capable of, and certainly less so for the infant brain. And all the expert is being asked for is a prognosis, not a diagnosis. Honestly, the number of doctors who will be even willing to offer one in such a context is not large.
Is it only me that is horribly offended by the poor peoples plight being spread all over the damned news?
If I were to have a personal tragedy, I would not want it trumpeted throughout the land. I would want my grief and personal sadness to be PERSONAL.
How the birth occurred, and what has transpired since then is none of anybodys freaking business other than the parents, family and the hospital in question.
FWIW, if they could have survived, I would have 2 sons now. The inability to carry children is MY problem, and nobody elses, for ME to discuss and not to get spread all over the newspaper. The hospital should NOT have released anything about the issue UNTIL and IF it hits the court system.
Nuchal cords occur in approximately 1 in 4 births. In themselves they are not an indicator for cesarean section.
Did you read the article in the OP? It already has gone to court - the parents went to court to get the order to maintain life support until they can get a second opinion. The parents and their lawyers have been freely talking to the media. It’s not like the hospital unilaterally made this public against the wishes of the parents. I’ve read many articles about this case, and I haven’t seen any that quote comments from hospital officials - all the information is coming from the parents, their lawyer, and the courts. Can you direct me to a cite where the hospital is releasing too much information?
I’ve had one emergency c-section and one VBAC that was almost a c-section (I was being prepped in the OR when the baby decided to just get it over with). For both, I was being handed consent forms right before they wheeled me down the hall. One birth was in the U.S., one was in Australia. I know that some OBs require birth plans which include consent for a c-section and that that paperwork is usually taken care of before the hospital visit.
My point with raising the issue, though, is that this woman may not have given consent to a c-section, whether that consent was requested prior to the hospital visit, when she checked in, or during labor. There were some questions in the thread about why labor was allowed to go on so long, why a c-section wasn’t performed earlier, and whether the doctor(s) made a bad decision. It’s possible that the mother was the one who chose to delay or refuse the surgery. The doctor can’t just wheel you in and cut you open if you’re saying you don’t want that to happen.
Marienee, nice post, very insightful, the first paragraph in particular.
(That’s all I got.)
Agreed.
These parents are most likely deeply in denial and fighting a losing battle, but I don’t see any reason or understand the inclination to attribute their actions to any malign or political motives. They just don’t want their kid to die. Who does?
That’s right; we have our own versions of privacy acts here - PIPA (Personal Information and Privacy Act) and FOIP (Freedom of Information and Protection of Privacy Act - colloquially known as Fuck Off - It’s Private). If the hospital crosses these lines, that would also be a headline.
I’d just like to point out that the baby is in the children’s area of the University hospital (the Stollery is part of the University hospital in Edmonton), so we’re not talking they want a second opinion different from the pediatrician they have at the small town hospital but they want a second opinion from another specialist. The doctors may already have consulted with a specialist from the Alberta Children’s (in Calgary, another excellent children’s hospital) and so they have gone further afield by getting a specialist from Victoria.
Friends of mine had a baby…let me see…
My friend did not trust doctors, who she believed performed c-sections too often and for their own convienence. She had a high risk pregnancy and managed to find a midwife who would deliver (fortunately, in a hospital) (risk factors - over 35, morbidly obese, pre-eclampsia, previous emergency c-section, gestational diabetes). It took a search to find a like minded “no intervention” midwife as most wouldn’t touch her, and most OBs would only take her if she agreed to a c-section.
Because there was no doctor at the delivery, when the baby went into fetal distress, it was problemtatic. There was at least fifteen minutes the baby was without oxygen.
They were given a poor prognosis. But chose to keep the baby on life support. She spent three months in ICU.
The baby is now a pre-schooler and has moderate to severe cerebral palsy. She cannot talk (but can understand) and cannot walk more than short distances (and that with the help of crutches and appliances). She has horrible eyesight, only partially correctable and will eventually go blind. Some of her internal organs were badly damaged.
Given her initial prognosis, she has exceeded expectations in terms of development. Her parents find this a very satisfactory outcome.
Dangerosa, I don’t think I trust myself to comment on your friend in IMHO.
Well, how many times have you seen people post that OBs “perform too many c-sections for their own convenience.” Or that “vaginal birth is better” (stated upthread by the way). My friend is not the sharpest knife in the drawer and really didn’t understand the difference between a generalization about a population (in the U.S. we perform a LOT of c-sections, often unnecessarily. And a vaginal birth does have advantages for both mom and baby) and a recommendation for an individual with additional risks.
Sorry, off topic, but its a pet peeve of mine. In addition to this one, one of my girlfriends almost bled to death because she refused the recommended scheduled c-section because “it wasn’t best for the baby” and “doctors recommend c-sections for their own convenience.” (She’s brighter, but I really don’t think what her OB was afraid of was ever really spelled out to her).
The combination of the internet and LLL meetings can be dangerous - there isn’t a lot of room for the “breast is great, but bottle feeding might be your best choice” or “a planned vaginal birth that goes the way you want is cool, but if your doctor says c-section, consider it might NOT be about his tee time, but might be because he remembers a situation that you remind him of that didn’t have the happiest of outcomes.”
Women are being pressured into making terrible decisions by groups that purport to have their best interests at heart? That’s - a very bad thing.
None, other than do we really need to get our vicarious thrills or recreational outrage by reading of peoples personal tribulation? I am quite certain that if the judge had wanted to, he could have put a court mandated silence on any and all reporting, and personally he should have.
I am quite certain my mom’s multiple miscarriages never got published anywhere, and my sister dying of leukemia and being used as a guinea pig by Sloane-Kettering only got published in select medical journals without her name plastered everywhere [she was apparently an early experiment with cortisone]
Not pressured, not being fully informed of the risks and weighing the opinion of laypersons (who do have some very valid points) higher than that of people who went to medical school and deliver babies for a living.
Your personal circumstances aside, there is every reason to think (based on their behaviour and the behaviour of their lawyer) that these parents want as much press as they can possibly get.
Really ‘The hospital is trying to kill our baby!!!’ is a rather sensational headline and there’s every reason to believe that they are releasing all this information to get the court of public opinion on their side. Perhaps they think it will be harder for the hospital to pull the plug on their child if it’s front page news. They’re probably correct.
I’m all for patient privacy and keeping personal information out of the media if that’s what the patient (or their parents/guardians) want. However, in this case it’s pretty clear that the parents have no qualms about talking to the media, and have given many interviews. Can a judge really tell a patient that they’re not allowed to tell their own story to the media?
Dangerosa, actually your friend’s outcome is relatively mild, and can be dealt with realatively easily.
There is a HUGE difference between your friend’s case, and a kid who is so profoundly affected they are in a persistant vegetative state or even just profoundly retarded. Sure they are loved…but it is a simple fact that profoundly retarded children are very very hard to take care of. That’s the reason why many of them end up in pediatric nursing homes.
Oh so they want the best of the best? It really is a heartbreakng case. I understand quite a bit, and it is a very sad case. But the question this case raises is " how far do you go in saving a kid?"Yes, the brain is quite remarkable BUT, there are limits.
I really doubt the hospital was going around advertising this case in an attempt to drum up support for their side of the disagreement :rolleyes:
That would be “very” on the ridiculous scale for those who are keeping score at home, right? 