To save or not 23 week babies...

[Lyndz]

This thread has had me in tears, i'm truely sorry to all of those who have had to make such a heartbreaking decision

I have no idea what i would do and i hope never to be in such a situation. Every life deserves a chance, but if that chance involoves a lifetime of suffering and pain, then i'm not sure that i would be able to push with medical treatment.

 

[Marzipan_girl]

Wow.... m sat in awe after reading some of these posts and don't really know how to put this without sounding at all patronizing...after all, I can not imagine in the slightest how it must be to be in this situation....
but, I have to say, there are some VERY brave ladies here....

 

[xnmd1]

i don't know how to answer this question, it's such a delicate situation. so many things come in to consideration, especially the pain and suffering of the baby, as well as their quality of life down the road.

Our NICU is split up into 3 sections, 1 for the most poorly babies, ones for babies in the middle, and then a "transition room" for babies who are soon to go home.
Jarrett started in the one for the most poorly babies. There was a little baby next to him in a cot named marcelono. He was born weighing 1 lb 2 oz. He was six months old, and still smaller than my LO. I wanted to go give him a cuddle so bad, he was so so sweet.
Then when we got to the transition room I frequently saw the mom to two twins who were in that room. They were both just over 1 pound each as well. She had been living in the hospital for 7 months and was hoping to go home in the next 6 weeks.

I went into labour at 26 + 5 and I am so so thankful every day that I got to the hospital soon enough for them to intervene and keep my LO in there longer. I feel so sad it brings tears to my eyes when I hear about people losing their LOs.

The biggest thing that makes me question why we don't routinely try to save 23 weeks is: If a baby born at 23+5 like marcelono can survive .. why can't a baby who is 5 days younger?

maybe babies born so soon should have more critertia than just gestation to determine wether or not to try to save?

 

[meldmac]

I honestly think it should be up to the parents and not medical profession. This is why I think this.

My cousin who was type one diabetic had to have her baby taken at 23.5 weeks as her liver was failing. He was born at 1 lb, my grandfather said his head was smaller then a door knob. No one thought he would survive. But 6 months later they took him home from the hospital. By the time he was 2 he had had 2 major heart operations. He is now 7 years old and is the sweetest most caring boy you would ever meet. He has health problems, but he gives so much joy to everyone around him and is taken care of so well. I know if he had not of survived my cousin would have been devastated and might not have survived herself as she was not well either. She said she fought because she knew she had to because of him.

She told my mother while she was in the hospital that if he died you might as well get two coffins. It was such a hard time for them all. I can't even imagine how much harder it would have been if they had just let him die without trying to save him. I know he's got health problems but he has a great home and a loving family who adore him and he is the most happy boy you will ever meet. He never complains at all. I hate to think that he might not be here because of some cut off made by some stranger in the medical profession who only cares about $'s and statistics.

 

[RedRose]

I watched the programme, and I honestly don't know what I would do. I just have no idea.

All I know is that mums who go through this are completely amazing.

 

[fifie123]

i couldnt begin to imagine what it would be like, you dont know until you have experienced it, its one of them,

 

[bubbles]

I didn't watch the programme as I knew I would end up getting angry and upset, I did however watch the discussion around this on "the big question" on sunday. My views won't change with or without seeing the programme. Every child deserves a fighting chance, I hate that they are not given that chance and their right to life as a human being is snatched away from them by a complete stranger

 

[CMIL]

I watched the programme and the live debate on the subject on last weekends 'the big questions'. Personally I don't think the decision should lay with the parents. I would prefer it if we set a law like the dutch. I can't believe such a huge decision is given to a woman in labour. I would want to make the decision to let the baby go but who knows until you are in the situation. I would like to think I would have the strength to stay objective enough to make that decision.

I don't agree with those who say it isn't about money. There is a finite pot of money and it is someone's job to distribute it to the best causes. I know it seems crass but there has to be some practical thought application to what is a very emotional subject. A line has to be drawn somewhere and given the stats I think that line sits better at 24 weeks.

In answer to the programmes own question, yes I think medical intervention has gone too far and just because we can, doesn't mean we should.

 

[kelly29]

save x

 

[jakey1]

I have just watched this programme on i-player and it has had me in floods of tears I simply can't imagine having to make a decision like that and hope that I never find myself in that situation.

Before watching the programme, my opinion was always that babies born at 23 weeks should be given every chance possible and that there should be no limit as to the amount of medical intervention. However after watching the documentary my feelings have changed slightly. I now feel that each case should be individiually considered and whilst I still feel that the option to resuscitate should be available if that is what the parents want, I don't think that medical intervention should be unlimited if it is ultimately going to cause prolonged pain and suffering - I hope that I have worded that in the way that I wanted to express it, as it is such a delicate subject and I don't want to upset anyone.

Finally I just wanted to say thank you to the ladies who have shared their own personal and painful experiences throughout this thread as I can't begin to imagine what you have been through and I truly admire your strength

 

[Zedfaca]

I haven't seen the programme yet. Not sure if I will. I've held a 23 week old baby. She had been dead for hours so no chance of resus. I would've done anything to breathe life back into her, but the thought screaming through my head was PUT HER BACK. Put her back in my tummy, not wire her up to the mains. These babies do deserve a chance but they should be safe and warm in the womb. The outside world cannot provide a substitute for a baby THAT small. They're tiny. Their legs are smaller than your little finger. To hold a son or daughter that small, with their little perfectly formed face, is the saddest thing you can do. If they are going to die, I'd rather it was in my tummy or in my arms as safe and warm and pain free as it could be. I think the thing is that I value them not suffering more than I value their life passing away and the suffering I then have. Given that I can't see where they would even begin to start taking care of her. The thought of someone sticking a needle in her makes me feel sick. No, the only thing I wanted was to have her back in my tummy and that is impossible.

x a million hun, I sit in tears reading your words...

Thank you both! I have a very happy and healthy twelve pound seven week old baby boy cuddled up to me now and he is a great, great comfort.

I did watch the programme this afternoon. I have to say, if someone had asked me when I was pregnant I would've said do anything to keep her alive but I don't think I would've understood what I was asking for. You can't even imagine how fragile these babies really are. I'm kind of relieved that at least I wasn't put in that position. It really is the most awful thing but if only one in a hundred babies make it, then they're 99% likely to suffer for nothing.

 

[AP]

It really is the most awful thing but if only one in a hundred babies make it, then they're 99% likely to suffer for nothing.

Putting it like that does make me think slightly differently.I asked my DH what he thought we'd do, and he said it should be looked at on a case by case basis, and I agree with that. It would just depend.
Put a bunch of preemies the same gestation together and every story would be so different, condition, weight, size, gestation, and even gender it all really makes a difference.

I think we could all have our own opinions here on the forum, but unless you are faced with that decision, no-one would understand just quite as well as the parent.

Massive hugs to you sweets, you are so brave. xxxxxxxx

 

[Eve]

I haven't seen the programme yet. Not sure if I will. I've held a 23 week old baby. She had been dead for hours so no chance of resus. I would've done anything to breathe life back into her, but the thought screaming through my head was PUT HER BACK. Put her back in my tummy, not wire her up to the mains. These babies do deserve a chance but they should be safe and warm in the womb. The outside world cannot provide a substitute for a baby THAT small. They're tiny. Their legs are smaller than your little finger. To hold a son or daughter that small, with their little perfectly formed face, is the saddest thing you can do. If they are going to die, I'd rather it was in my tummy or in my arms as safe and warm and pain free as it could be. I think the thing is that I value them not suffering more than I value their life passing away and the suffering I then have. Given that I can't see where they would even begin to start taking care of her. The thought of someone sticking a needle in her makes me feel sick. No, the only thing I wanted was to have her back in my tummy and that is impossible.

x a million hun, I sit in tears reading your words...

Thank you both! I have a very happy and healthy twelve pound seven week old baby boy cuddled up to me now and he is a great, great comfort.

I did watch the programme this afternoon. I have to say, if someone had asked me when I was pregnant I would've said do anything to keep her alive but I don't think I would've understood what I was asking for. You can't even imagine how fragile these babies really are. I'm kind of relieved that at least I wasn't put in that position. It really is the most awful thing but if only one in a hundred babies make it, then they're 99% likely to suffer for nothing.

It just breaks my heart hun, and I know what you mean, I have a gorgeous 14 month old girl here to snuggle and lucky enough to have an 8 year old handsome man for comfort. I lost my son 3 years ago at 37 weeks due to a placental abruption, it's a pain I wish NO ONE had to ever feel

 

[Nibblenic]

I think it really has to be decided on a case by case baisis. I have two close friends who had premies at 26+5 and the other 27+3 neither ever had any big complications neiter needed to be on SBCU for very long after birth and both came home before thier full term due date and have no health problems and are doing really well.

SO I have really only seen the positive outcomes.

I dont think life should be continued at ANY age if it is going to means constant pain/hospitalisation and no quality of life. Be that person 90 years or or 25 week gestational age.

 

[Zedfaca]

[/QUOTE]

It just breaks my heart hun, and I know what you mean, I have a gorgeous 14 month old girl here to snuggle and lucky enough to have an 8 year old handsome man for comfort. I lost my son 3 years ago at 37 weeks due to a placental abruption, it's a pain I wish NO ONE had to ever feel [/QUOTE]

I'm so sorry. There's the other side of things for you too where you are far enough along and things still go wrong. There really is nothing to describe that feeling of loss. They're safe now though. I remember the next day which was somehow a million times worse than the first day and the only good thing I had was that I knew nothing bad would ever happen to my baby. We're so lucky to have the comfort of a new child, although they can never be a replacement they make things make sense again if you know what I mean?

 

[Zedfaca]

It really is the most awful thing but if only one in a hundred babies make it, then they're 99% likely to suffer for nothing.

Putting it like that does make me think slightly differently.I asked my DH what he thought we'd do, and he said it should be looked at on a case by case basis, and I agree with that. It would just depend.
Put a bunch of preemies the same gestation together and every story would be so different, condition, weight, size, gestation, and even gender it all really makes a difference.

I think we could all have our own opinions here on the forum, but unless you are faced with that decision, no-one would understand just quite as well as the parent.

Massive hugs to you sweets, you are so brave. xxxxxxxx

Thank you. It's heart breaking no matter what you decide. In many ways I think having that choice is worse than anything. Then you'll always be thinking what if I made a mistake. Like that poor mother and daughter who don't even dare ask each other if they think it was worth it. And believe me, even if you know you couldn't have done anything you still drive yourself crazy thinking what if I'd done this or that?

 

[redpoppy]

I think it's too emotive a topic. I thought I knew what I thought but really I just know what I think for me, as a not expecting, not pregnant, not waiting to try, not trying long term to conceive woman. I think documentaries like that (which I didn't see) and the coverage all over the place are very good and the facts and stats should be provided to people in the public BEFORE they are 23 weeks and emotional and distraught etc. So I think the discussion is good. I do think that perhaps it's one of those individual decisions. I imagine if I made a decision on the spot not knowing things it could go either way and I like to know what I think in principle and ideally without that emotional sway. I hope everyone else has that opportunity too.

 

[Eve]

It just breaks my heart hun, and I know what you mean, I have a gorgeous 14 month old girl here to snuggle and lucky enough to have an 8 year old handsome man for comfort. I lost my son 3 years ago at 37 weeks due to a placental abruption, it's a pain I wish NO ONE had to ever feel

I'm so sorry. There's the other side of things for you too where you are far enough along and things still go wrong. There really is nothing to describe that feeling of loss. They're safe now though. I remember the next day which was somehow a million times worse than the first day and the only good thing I had was that I knew nothing bad would ever happen to my baby. We're so lucky to have the comfort of a new child, although they can never be a replacement they make things make sense again if you know what I mean?

I know what you mean. When we lost Kaleb they asked me if I wanted moved to a different area since babies were crying and such, but I said no. I felt comfort in knowing these people were taking their baby home. I was envious of them yes, and it did sadden me, but I needed to see the good side too, I think it helped me.

Yes, we removed him from life support. We were told he was going to die through the night and just didn't want to prolong the inevitable, know what I mean? I am so thankful he didn't feel pain the 8 hours he was alive outside of my womb... not many people come into the world and leave without feeling pain, and my son did... my angel.

It really is the most awful thing but if only one in a hundred babies make it, then they're 99% likely to suffer for nothing.

Putting it like that does make me think slightly differently.I asked my DH what he thought we'd do, and he said it should be looked at on a case by case basis, and I agree with that. It would just depend.
Put a bunch of preemies the same gestation together and every story would be so different, condition, weight, size, gestation, and even gender it all really makes a difference.

I think we could all have our own opinions here on the forum, but unless you are faced with that decision, no-one would understand just quite as well as the parent.

Massive hugs to you sweets, you are so brave. xxxxxxxx

Thank you. It's heart breaking no matter what you decide. In many ways I think having that choice is worse than anything. Then you'll always be thinking what if I made a mistake. Like that poor mother and daughter who don't even dare ask each other if they think it was worth it. And believe me, even if you know you couldn't have done anything you still drive yourself crazy thinking what if I'd done this or that?

We had to make a choice to fight or let go and it was the hardest decision we will ever make... But we know we made the right one, even though I find myself second guessing sometimes, which is only natural. That is why I truly believe it should be up to each individual case, with an unbiased expert overseeing.

 

[kate.m.]

If i was thinking with my head (& knowing the 99% suffer statistic), i would say dont resuscitate. One of the nurses on the programme made an interesting point: the money spent on resuscitating these babies with a 99% chance of death or severe problems, could be spent on research into preventing premature births in the first place..... But if i were actually in that situation, i sincerely doubt id be thinking with my head. I would imagine the only thought would be "save my baby"
x

 

[Zedfaca]

QUOTE

I'm so sorry. There's the other side of things for you too where you are far enough along and things still go wrong. There really is nothing to describe that feeling of loss. They're safe now though. I remember the next day which was somehow a million times worse than the first day and the only good thing I had was that I knew nothing bad would ever happen to my baby. We're so lucky to have the comfort of a new child, although they can never be a replacement they make things make sense again if you know what I mean?[/QUOTE]


I know what you mean. When we lost Kaleb they asked me if I wanted moved to a different area since babies were crying and such, but I said no. I felt comfort in knowing these people were taking their baby home. I was envious of them yes, and it did sadden me, but I needed to see the good side too, I think it helped me.

Yes, we removed him from life support. We were told he was going to die through the night and just didn't want to prolong the inevitable, know what I mean? I am so thankful he didn't feel pain the 8 hours he was alive outside of my womb... not many people come into the world and leave without feeling pain, and my son did... my angel. QUOTE

What a brave thing to do and yes, I believe you did the right thing. Of course you did. No one could possibly overcome their own wish to keep their baby alive and let them go otherwise. It is so much harder to let them go. I won't go into the circumstances of what happened to me because it's a very, very long story and yes a decision was made along the way and I just couldn't bear it for someone to ask me why I didn't do more. I don't even dare tell my closest friends in case they do, even though my head tells me no one could ever be that cruel. Anyway I know you did the right thing. I know you acted out of love.