Actually to clarify, I was talking about parents who are carriers of extreme profound genetic disabilties. What I mean by extreme profound are PVS or degenerate conditions (a la Tay Sachs) that can end up with the affected in a persistant vegetative state. I do think the majority if not virtually almost all parents who are carriers of conditions that can cause extreme profound disabilties, will do the right thing and make sure that they don’t have kids with the condition. I know that the rate of Tay Sachs has gone down drasticly, as a result of such counseling. Which is GOOD. But imagine a world where Tay Sachs, and other extreme profound disorders didn’t exist!
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And in your case it was just b/c of blindness,deafness or CP…three disabilties which aren’t really that big of a deal. They can be adapted to and lived with.
However, a baby with an extreme profound condition really doesn’t have that much of a life. I’m not talking about a baby with profound disabilties. A kid with profound disabilties is basicly just always going to be a baby. They do have a life, albliet limited.
Gotta respectfully disagree with you on this. I regularly come across parents who make such horrendous decisions for their children that they end up losing their authority to make decisions for their children.
As far as the child in this thread goes, who ended up making the choice instead of the parents? Not lawyers, not insurance company representatives, not bureaucrats, and not people currying favour to gain public office. Two levels of judges made the decision, following submissions from the parents and other parties. The first level was one in which the judge had specialized experience in dealing with such matters. The second level was one by a judge of superior jurisdiction. A further appeal route was available to the parents. The parent’s case was fully funded by the government. The child’s medical expenses were fully funded by the government. The parents’ basic financially needs were funded by the government.
What I’m getting at here is that no, parents do not have an unfettered right to make decisions for their children.
Instead, what we have here in Ontario is the right of the child to have decisions made that are in the best interests of the child.
Although being the parent is a very big consideration in determining who should make decisions on behalf of a child, it is not the only consideration, and there is no presumption in law up here that the parent shall have that authority should the issue go to court.
The best interests of the child trump the personal interests of the parent. The rights of the child trump the rights of the parent.
My infant daughter has Spinal Muscular Atrophy, the #1 genetic killer of young children. Prognosis is 2 years (based upon the averages for Type 1). SMA does not impact cognition.
She’s 1 year old this week. In theory, her life expectancy is half over this week.
There are tough ethical issues involved. Many parents choose to do nothing or palliative care. Many choose some non-invasive ventilation (NIV) support. Many choose to trach.
One thing I don’t understand (but I do understand) is how some people find out they are carriers due to having an SMA child, then they blindly roll the dice by having more children without testing. I have heard people having 3 consecutive SMA babies. The part I understand is how the decision is probably based on religion (i.e., why test the fetus if I’m not going to terminate the pregnancy even if it comes up positive for SMA?).
We chose NIV (during sleep and will expand to full time NIV if needed) and will continue it so long as she shows us that she’s happy and comfortable, which she is. That’s the bottom line for us… quality of life.
If she gets sick or is suffering, we’ll try to fix it until there is no fix available. Our current thought does not include trach if or when the time comes because it is not medically recommended and the balance of factors suggests the quality of life on trach does not justify doing it.
Yeah, I know it comes out that way, sometimes. But the best interest of the child (or non child without the ability to make known their interests or desires) are subject to the opinions of others. I can emotionally support removing the authority to make those choices in cases where legal action for abuse or neglect have been shown to be justified in court. But even judges make decisions on their own perceptions. The only answer I can find is that aside from legally proven abuse or neglect, unless I agree that my choices should be reviewed before I can decide for my child, I accept that the right to choose includes the right to choose things I would not choose.
That bolding is the key. The parents wanted their child to die at home, and that’s understandable. The hospital had a way for that to happen.
This bit:
Makes me wonder if the parents and their dying child were used cynically by people arguing against a political policy - that they might well have accepted the hospital’s suggestion to let their baby die at home, if it weren’t for this organisation’s intervention. That those ‘pastors’ maybe made them hope for a miracle if the baby continued breathing a little longer, and a little longer more and a little longer again, rather than accepting the miracle than he lived at all and that he’s not really living now.
And said intervention means their child probably won’t die at home.
It seems so cruel. I can’t imagine the kind of person that would manipulate a grieving parent like that.
I had a feeling you would be posting. But yet, SMA is a profound PHYSICAL issue vs. an extreme profound MENTAL issue.
There is a difference. Your baby can interact with you. Whereas Joseph is in a profound PVS and can’t even interact, even at the level of a baby. (even a newborn) Make sense? The parents in this case aren’t thinking about quality of life. The baby is in a profound PVS, and is degrading.
Oh, it absolutely makes sense. I’m tired, but I was basically beating around the bush regarding terms like “terminal degenerative condition.” My daughter has a terminal degenerative condition (SMA) but I wouldn’t hesitate to go the extra mile for her and I can’t really fault SMA parents who decide to trach unless the trach would cause more harm than good. The fact that SMA does not damage cognition is a huge factor in all that. She can tell us if she’s happy or suffering.
If the “terminal degenerative condition” at issue caused PVS and all you are doing is extending life for its own sake (without due regard to quality of life), then the issue is vastly different, IMHO.
Wouldn’t be the first time. I think my opinions on these issues are as strong as anybody’s (certainly I posted enough about Terri Schiavo, and that was * before* I had direct experience with these kinds of things), but I think it’s really unfortunate when these things are blown up into national media events. And it’s even worse when people try to shoehorn these cases into their own agendas regardless of how well or badly a fit it is, and how badly that may serve the people involved. And just to make it plain, I’m not talking about anybody here.
And all the best to your daughter, BearNenno. I keep meaning to post more often in your thread, but I’ve found it hard to press the button and read more. I do think about what you’re dealing with.
Glad we have it out in the open, that there IS a HUGE difference between phyiscal or sensory issues vs. mental issues. Heck even most profoundly MR kids don’t deal with the issues that a terminal degenerative mental condition brings about. Which is why I use the phrase extreme profound to differentate those cases. Extreme profound to me, is basicly kid who’s reached the PVS stage of functioning whether through a degenerative disorder or a profound brain disorder like hydranencephy.
There is a whole lot if “it depends” in your question.
I (like WhyNot) have an ex 23 week preemie (and I work exclusively in the field of preserving problem pregnancies, which means we deliver a lot of preemies).
I was told my child had a 50/50% chance of survival and an 85% chance of disability such as blindness, deafness, cerebral palsy and mental retardation or some combination of the above. While in the hospital, I saw a news story about the Sidney Miller case- a 23 weeker with all of the above problems. The Miller family was suing the hospital and doctors for multiple millions to cover the cost of Sidney’s care and because they stated they had asked for a DNR but the baby was resuscitated against their wishes- it was one of those unusual ‘wrongful life’ suits.
I, too, asked for a DNR, but was told by the neo’s and the lawyer that the hospital treats infants greater than 24 weeks and/or 500 grams and they thought my in utero infant was about 700 grams.
My child was was born at less than 24 weeks but greater that 500 grams, and was treated.
Most hospitals that have the facilities to treat preemies follow that 24 week/500 gram rule. Currently, most neo’s consider treatment 22 weeks futile. Weeks 23 and 24 are ‘grey areas’ and evaluated on a case-by-case basis, and 25 weeks preemies generally are treated.
Of course, a lot of this depends on the facility. If the hospital has the equipment and expertise to treat these extremely premature infants, they generally do. If they do not have the ability, they transfer the patient to a more appropriate facility. As you can imagine, the outcome is mightily dependent on where you are when you deliver.
And of course, a lot of this depends on the infant. My facility specializes in complicated pregnancies and has had quite a few late 22 week survivors, but if the baby has no kidneys or no brain or some of the more complicated defects, then we try to follow the parents wishes. Some prefer to end their pregnancies. Some want to go for it.
As far as impaired infants surviving and who takes care of them- the family generally makes that decision.
I would love to know more about where you work. (And if there are any job openings for a new grad nurse! :D)
And they won their case, but it was later overturned and thrown out by a higher court, yes?
Can parents request a DNR for their children, generally speaking? Something I’ve never thought to ask, honestly. I would be surprised if they could, considering that they can’t even remove their child from the hospital AMA (Against Medical Advice). ETA: They can arrange a transfer to another hospital, that is, but they can’t just say, “we’re done here, I’m taking my kid home.”
We lost our first little one to a rare disease which was never determined the exact cause; the symptoms were so unusual that they couldn’t even name the disease. The doctors didn’t know if it was genetic or not, and were of no help in determining if we should try for more kids or not.
From the original article, it says that the disease has not been determined, and is so then criticism of the parents for having a second child seem to be to be overly harsh. Also, Marley23, unless you are reading from other material, it looks like the child died 9 years ago, not that the child was 9 when she died.
Fortunately, we’ve had two others who did not develop the same symptoms and since we’re calling it quits, then we’ll never know if it is genetic or not. Since it was such a rare disease, we don’t think it was, but who knows.
For the question if the parents actions, it’s a tough situation. We go to meetings for people who have lost babies, and the grief there is hard to take. It’s been several years now, so we go less for ourselves now than to give support for the newer ones. You can never mistake those who have just recently lost their child.
Are these parents in denial? Probably. Would I do what they did? I don’t think so. We choose to not elect for heroic measures, but there is a world of difference between losing a son you’ve only held for 4 hours and one you’ve had for 13 or 14 months.
Which leads to the final question, can I criticize them? No.
True, but Toyko Player, if it was so unusual that it was unnamed, chances are that it was a fluke, rather then genetic. Also I thought that your kid’s disorder had been classfied as a severe Walker Warburg? Besides, no one is criticizing them for having another kid.
We’re commenting that when Jacob started showing symptoms, they should have gotten a trach THEN.
It was thought to be atypical Walker Warburg at one stage, but they concluded it was not.
Another family we know from the group also had a son who died from a very rare and unknown disease, and the doctors said it was most likely not generic. They had a girl who was healthy, and then another son who just died this January. All the doctors were able to say is that now it appears to be likely to be genetic, but of unknown cause.
For the question about the timing, I can easily see how things would go along in a particular path and then suddenly get into the situation where the parents are.
My ex and I requested and obtained a DNR order for our son, once it was established that heroic measures would be futile and painful. Once the DNR order took effect, my son got palliative care only.
