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Thread: Quality of Life (Trigger Warning)

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    #1

    Quality of Life (Trigger Warning)

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    Posted in debates because it's one of those emotional/heated topics.

    One of my good friends is an emergency OBGYN and posted this article on FB today.

    'Nathan was born at 23 weeks. If I'd known then what I do now, I'd have wanted him to die in my arms' | Society | The Observer

    For those who don't want to read, it's about a mom of a 3 year old who was born at 23 weeks. He is not expected to live much into his teens. He is profoundly deaf, has chronic lung disease, cerebral palsy, global developmental delay and diabetes inspidus.
    She says that as much as she loves her son, a part of her wishes she had the information, support, and strength to let him die peacefully at birth.

    Thoughts?

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    #2
    For me personally, If I had a child 25 weeks or younger I would hold that baby in my arms and allow them to die. I would not send them to the NICU. At 25 weeks there is a 50% chance of survival and if the baby does survive then it has a 50/50 shot of having serious health issues. So that means that there is really only a 25% chance of the baby being healthy.

    But that is a decision every parent has to make for themselves. And that is why it is very important that a neonatologist sit down with the family and decide what is best for that family because every baby and every situation is different.
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    Quote Originally Posted by RetepDoc View Post
    For me personally, If I had a child 25 weeks or younger I would hold that baby in my arms and allow them to die. I would not send them to the NICU. At 25 weeks there is a 50% chance of survival and if the baby does survive then it has a 50/50 shot of having serious health issues. So that means that there is really only a 25% chance of the baby being healthy.

    But that is a decision every parent has to make for themselves. And that is why it is very important that a neonatologist sit down with the family and decide what is best for that family because every baby and every situation is different.
    I agree, but I do wish this was something mothers were taught about from the very beginning. Not to scare them, but to help them understand the reality of the situation without the added emotions of this little tiny baby's life depending on your decision right that second.

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    #4
    Quote Originally Posted by RetepDoc View Post
    For me personally, If I had a child 25 weeks or younger I would hold that baby in my arms and allow them to die. I would not send them to the NICU. At 25 weeks there is a 50% chance of survival and if the baby does survive then it has a 50/50 shot of having serious health issues. So that means that there is really only a 25% chance of the baby being healthy.

    But that is a decision every parent has to make for themselves. And that is why it is very important that a neonatologist sit down with the family and decide what is best for that family because every baby and every situation is different.
    I don't know where my cut off would be as yet, but I probably wouldn't try to save a 23 weeker. To me, quality of life is a huge factor in whether I want to try and save that baby or not. Just because we have the technology to try and save these babies, doesn't automatically mean we should and I wish it was something spoken about more often.

    As an aside, I wonder though about mandatory resucitation laws? I toured a NICU the other day and the nurse told us that after 24 weeks they are required to resuscitate, regardless of the wishes of the parent. That was a really scary thought to me actually. How common is that?
    Last edited by GingerGirl15; 05-06-2014 at 10:46 AM. Reason: Random icon in title
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    #5
    Before I had DS I always agreed with PP regarding babies before 25 weeks. Now that I've held my son in my arms, I just don't know what I would do.

    As selfish as this sounds I would almost hope I would not be in a position to make the decision so it would be made for me.
    Never do anything halfway unless you want to be half happy.

    Is this a dream? If it is, please don't wake me from this high. I'd become comfortably numb
    until you opened up my eyes to what it's like when everything is right...I can't believe you found me ♥
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    Considering i was a baby that had a 50% chance of survival after birth and i wasn't supposed to live past age 13 due to my chronic heart conidition and i am now 23, a nurse and giving back to the sick community i would take any moment with my kid because a chance is a chance and i survived mine, i would give my child his or hers. but it is hard and it isnt easy so i understand why some mothers would rather allow their child to die in their arms but for myself i wouldn't because there is a chance that child could end up fine...
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    #7
    I honestly don't know what I would do, I see merits to both sides but I feel strongly that the family should be supported in their decision either way. What a terribly hard thing to go through, whatever the outcome. I hope I am never, ever placed in that situation.
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    #8
    Quote Originally Posted by HazeGray View Post
    I agree, but I do wish this was something mothers were taught about from the very beginning. Not to scare them, but to help them understand the reality of the situation without the added emotions of this little tiny baby's life depending on your decision right that second.
    I agree completely. There was a really good quote in the article that you posted that I think really sums up the attitude that a lot of parents have

    "You hear about 'miracle babies' or 'little fighters' and people have such a romantic view about premature babies – 'Oh, there's an incubator for a little while and then they go home and everything is rosy'. It's not."
    I saw it a lot when I rotated through the NICU. There were several families who honestly thought that the incubators were just as good as the womb and that their babies would turn out just fine. Unfortunately that is not always the case. And it was really hard to see them back in the special infant clinic for premies and have to talk to them about all of the medical and developmental issues their babies faced and would continue to face for the rest of their lives. Nobody expects to have a premie and therefore it is just not something that people read up on and educate themselves about. But I completely agree that it is definitely a discussion that should be had with parents earlier on.

    Quote Originally Posted by GingerGirl15 View Post
    I don't know where my cut off would be as yet, but I probably wouldn't try to save a 23 seeker. To me, quality of life is a huge factor in whether I want to try and save that baby or not. Just because we have the technology to try and save these babies, doesn't automatically mean we should and I wish it was something spoken about more often.

    As an aside, I wonder though about mandatory resucitation laws? I toured a NICU the other day and the nurse told us that after 24 weeks they are required to resuscitate, regardless of the wishes of the parent. That was a really scary thought to me actually. How common is that?
    There are laws that allow a physician to override the wishes of parents if it is in the best interest of the infant. For example, at 27 weeks an infant has about a 90% chance of survival. If the parents refused care for the infant then in that case I could see the medical staff overriding the parent's wishes and taking the baby to the NICU since the baby's chances are so good for surviving and doing well. But 24 weeks is super young. The neonatologists I rotated with did not go after 24 weekers and even at 26 weeks they would not go after them if the parents didn't want it.

    It could be hospital policy but mandatory resuscitation of a 24 weeker is def not federal law...at least not one that I have heard of.
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    #9
    I think it would depend on the situation. Quality of life is MUCH more important to me than quantity. That said, I'm not sure I would ever be able to make the call to let my child die.
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    #10
    I have a nephew who was born at 24 weeks, almost 14 years ago. He was a tiny 10" long and 1 lb 10 oz. He spent almost about three months in the NICU before going home. There were many days that were touch and go at the beginning. But today. He is a happy healthy almost 14 year old. In his case, he was definitely a blessing to his family and I believe that they might the right choice for their family.
    I'm not Lynn, but we ARE MSOS Best Friends and MSOS Twins.
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