To save or not 23 week babies...

[Babydreams321]

CAn you see/tell if this is repeated any time soon ladies??xx

 

[AP]

I dont know hun, but it is available via iplayer (on the internet, some phones, Sky and Virgin and the Wii.)

Mum2J&Kx2 and Zedfaca - dont think what of what ifs as mummys, you knew what was best.

 

[Tasha]

It wasnt claimed on the programme that 1 in 100 survive, but 6 in 100, 1 of which will have no disablities. However someone posted this on another thread;

There was an interesting article in the Gaurdian today about this programme saying statistics given weren't factually correct.

https://www.guardian.co.uk/commentisfree/2011/mar/10/premature-babies-price-life


From the article:

"Claiming that only one in 100 survives without significant disability is stretching a point, quite frankly," says Neil Marlow, professor of neonatal medicine at University College London and chief investigator of the Epicure study, which compares the survival and outcome of over 1,000 babies born between 22 and 26 weeks in 2006 with those born a decade earlier. "We know from the 1995 data that 11% were surviving then, with half of these – 5.5% – free of significant disability. Survival has doubled across the country since then, and it's widely known that survival in 2006 at 23 weeks was 20%, with half of these with no serious disability."


Moreover, in hospitals with the best neonatal intensive care facilities, survival rates are about 30%. His own hospital reported 45% survival rates at 23 weeks – around half of whom have significant disability, defined as cerebral palsy with motor impairment; learning difficulties with an IQ of less than 70; and, in a small number of babies, blindness or deafness. "I do think parents need to be given data which is really honest," Marlow says. "On a national basis these are not figures that are put in the public domain."


As for money, the article also mentions that Bliss say the 10 million cost of keeping the 350 23 week premature babies alive every year is 0.009% of the NHS budget. I find it bizarre that people involved in where funding goes question this and yet I know several people who have had unnecessary cosmetic surgery on the NHS, in the case of one person amounting to around £25,000. Yes, money is limited, but they should be looking at cutting costs in other areas first.

 

[midori1999]

I see someone's posted above one of the things I came on to say.

I certainly don't agree with the Dutch way of doing things. Gestational age isn't an exact science, it can easily be out by days. Plus, what if a baby is born at 23 weeks 6 days and 20 hours? 4 hours too soon to be helped so left to die? That seems ridiculous to me.

Some countries such as Sweden and Gemrany use very aggressive treatment on extremely premature babies (22-26 weeks, YES, 22 weeks!) and have much higher survival rates than the UK and lower levels of disability in survivors too. Plus, the article linked above does actually show that survival rates for 23 weekers have improved since the Epicure study in the 90's, overall seemingly doubled but at some hospitals trebled and in one the survival rate is 4 1/2 times the survival rate at the time of the original study.

Survival rates do depend on the hospital you are in, some NICU's have a much better survival rate for 23 weekers than others.

Also, disabilties. For the purpose of the original Epdicure study (the figures which are now 15 years out of date but yet were still used for this programme) 'disability' includes things such as wearing glasses and asthma. Hardly things we would consider massively life limiting, are they? I also think the disability thing is not only a red herring, but one of the reasons the parents should have a say. They are the ones who wll be living with that child and potentially taking care of them. I think it is very wrong to assume that disabled people always have less quality of life than people who are not disabled though.

Having had my twins at 23 weeks and losing one at 15 minutes old, one at 9 days, if gain faced with the same decision I would want my baby assessed at birth, like my girls were. If they were a good weight for their gestational age and showing good signs of life, a reasonable heartrate (they look for over 60BMP as a guide) and making an effort to breath on administration of oxygen then yes, I would want efforts made to get them into NICU.

 

[Gemmamumof2]

its really hard question to answer kind of not related but this is how i felt..

with my first pregnancy, i spent 9 months praying for a healthy baby.
when he was 4 weeks old he had meningitis fighting for his life
those few weeks i was praying for him to live.

you love your baby minute you know your pregnant, if theres a way to save your baby i guess you have to let go knowing you did everything.

 

[Tasha]

Sorry midori, I didnt know if you would see this thread and I think it is vital that people know the REAL statistics, which are not 6% chance of survival but 20-45% chance of survival. I dread to think (and pray not) that one of these Mummy's here reading this have to make that decision one day, and partly base it on the statistics in the back of their head because of a documentary.

I 100% agree about the disability thing, how many parents with children who wear glasses or have asthma would say they have a child with a disablity?

Plus, with Honey there was a scan performed on the 8th May if performed correctly it would of saved her life. However the post mortem points out that her lungs were the size of a 30 weeker (she was 36+6), and her kidneys the size of a 28 weeker (when my waters went), because she had been starved of what she had needed for quite some time there may of been other problems but those two things would of had an affect on her life! Is it wrong or selfish of me not to care and to wish the scan was performed correctly that day, so Honey was here and had a chance at life? Yes, our lives would be different but then most angel Mummy's would say that their lives are different, to what they feel they should be.

Just to clarify I am NOT saying it is worse to be an angel Mummy or to be a Mummy to a child who has a disability, just trying to get across that whatever decision is made, whatever the outcome for baby, the story doesnt end there.

 

[Laura2919]

I dont think it should be lowered. At what point are we going to stop and say 'we cant help a baby born at so and so weeks' Its just life, thats how it works, not everyone can be saved and it shows that the majority of 23 weekers dont survive and as much as people say screw the price unfortunately its a big part.. My girls were born at 29 weeks and I was VERY lucky, they came home just four weeks later, at 33 weeks gestation, they were very healthy apart from weakened immune systems! What if the NHS couldnt save babies that had a chance at survival because they just used that money on a 23 weeker who passed away because it had plenty of problems and was fighting against the world to live? NHS money doesnt just get a boost when its low, hospitals have to make cuts.

 

[midori1999]

The majority of 24 weekers don't survive either, or didn't until very recently. One baby's life isn't worth more than anothers. The money spent on NICU care for 23 weekers makes up 0.009% of the NHS, hardly significant, is it? I wonder how the NHS budget for things such as unnecessary cosmetic surgery compares to that?

The odds for 23 weekers are improving, despite what that silly programme said. In Sweden they have a survival rate of 53% for 23 weekers (and in fact, 10% of 22 weekers survive there too) over half of which will not have any serious disability. So the problem is not that we have reached the biological limit of viability, but that we just aren't getting it quite right yet. There are constant studies on how to improve outcomes for extremely premature babies though and also how to limit disabilities in them.

 

[Nic1107]

How sad that the life of a child is thought of in terms of cost and cutting expenditures. Surely if two adults were fighting cancer, the doctors wouldn't think of stopping treatment for the one with a lower chance of going into remission so they could spend more to treat the one with a higher chance? It shouldn't be any different for babies. IMO.

 

[Laura2919]

How sad that the life of a child is thought of in terms of cost and cutting expenditures. Surely if two adults were fighting cancer, the doctors wouldn't think of stopping treatment for the one with a lower chance of going into remission so they could spend more to treat the one with a higher chance? It shouldn't be any different for babies. IMO.

Well unfortunately it is thought of like that because we get free healthcare if we paid it probably wouldnt be the case.

I am not saying one childs life is more than another childs life but a baby born at 27/28/29 weeks has a greater chance of survival than a child born at 23 weeks thats why the 24 weeks is in place.

There is a point where we have to realise a baby at a certain age will have a poor quality of life and to keep them alive would be (for me) selfish. Just to add I am not calling everyone selfish just myself if I was in that position.

Like I said my girls were prem at 29 weeks and they were very lucky.

 

[xemmax]

How sad that the life of a child is thought of in terms of cost and cutting expenditures. Surely if two adults were fighting cancer, the doctors wouldn't think of stopping treatment for the one with a lower chance of going into remission so they could spend more to treat the one with a higher chance? It shouldn't be any different for babies. IMO.

Unfortunately the NHS does indirectly treat cancer patients in such a way, by calculating the cost-effectiveness of drugs which could potentially help them. Here's how they do it:
https://www.nice.org.uk/newsroom/features/measuringeffectivenessandcosteffectivenesstheqaly.jsp

 

[xemmax]

How sad that the life of a child is thought of in terms of cost and cutting expenditures. Surely if two adults were fighting cancer, the doctors wouldn't think of stopping treatment for the one with a lower chance of going into remission so they could spend more to treat the one with a higher chance? It shouldn't be any different for babies. IMO.

Well unfortunately it is thought of like that because we get free healthcare if we paid it probably wouldnt be the case.

I am not saying one childs life is more than another childs life but a baby born at 27/28/29 weeks has a greater chance of survival than a child born at 23 weeks thats why the 24 weeks is in place.

There is a point where we have to realise a baby at a certain age will have a poor quality of life and to keep them alive would be (for me) selfish. Just to add I am not calling everyone selfish just myself if I was in that position.

Like I said my girls were prem at 29 weeks and they were very lucky.

We do pay. Our health care is not free.

 

[Laura2919]

How sad that the life of a child is thought of in terms of cost and cutting expenditures. Surely if two adults were fighting cancer, the doctors wouldn't think of stopping treatment for the one with a lower chance of going into remission so they could spend more to treat the one with a higher chance? It shouldn't be any different for babies. IMO.

Well unfortunately it is thought of like that because we get free healthcare if we paid it probably wouldnt be the case.

I am not saying one childs life is more than another childs life but a baby born at 27/28/29 weeks has a greater chance of survival than a child born at 23 weeks thats why the 24 weeks is in place.

There is a point where we have to realise a baby at a certain age will have a poor quality of life and to keep them alive would be (for me) selfish. Just to add I am not calling everyone selfish just myself if I was in that position.

Like I said my girls were prem at 29 weeks and they were very lucky.

We do pay. Our health care is not free.

Through our taxes? We have the NHS. Whatever we pay in taxes wouldnt cover the cost of a baby spending 10 weeks in an NNU.

 

[coccyx]

Kinder to let them go sometimes, very difficult decisio nthough. Should not be a life at any cost and i don't just mean monetary value

 

[xemmax]

How sad that the life of a child is thought of in terms of cost and cutting expenditures. Surely if two adults were fighting cancer, the doctors wouldn't think of stopping treatment for the one with a lower chance of going into remission so they could spend more to treat the one with a higher chance? It shouldn't be any different for babies. IMO.

Well unfortunately it is thought of like that because we get free healthcare if we paid it probably wouldnt be the case.

I am not saying one childs life is more than another childs life but a baby born at 27/28/29 weeks has a greater chance of survival than a child born at 23 weeks thats why the 24 weeks is in place.

There is a point where we have to realise a baby at a certain age will have a poor quality of life and to keep them alive would be (for me) selfish. Just to add I am not calling everyone selfish just myself if I was in that position.

Like I said my girls were prem at 29 weeks and they were very lucky.

We do pay. Our health care is not free.

Through our taxes? We have the NHS. Whatever we pay in taxes wouldnt cover the cost of a baby spending 10 weeks in an NNU.

No, but in other countries where they do pay the costs would be covered by health insurance, so they would just pay their premium, surely? So no one would ever pay the full amount. Therefore we should be entitled to the same level of care and treatment as those who 'pay'.

 

[Laura2919]

How sad that the life of a child is thought of in terms of cost and cutting expenditures. Surely if two adults were fighting cancer, the doctors wouldn't think of stopping treatment for the one with a lower chance of going into remission so they could spend more to treat the one with a higher chance? It shouldn't be any different for babies. IMO.

Well unfortunately it is thought of like that because we get free healthcare if we paid it probably wouldnt be the case.

I am not saying one childs life is more than another childs life but a baby born at 27/28/29 weeks has a greater chance of survival than a child born at 23 weeks thats why the 24 weeks is in place.

There is a point where we have to realise a baby at a certain age will have a poor quality of life and to keep them alive would be (for me) selfish. Just to add I am not calling everyone selfish just myself if I was in that position.

Like I said my girls were prem at 29 weeks and they were very lucky.

We do pay. Our health care is not free.

Through our taxes? We have the NHS. Whatever we pay in taxes wouldnt cover the cost of a baby spending 10 weeks in an NNU.

No, but in other countries where they do pay the costs would be covered by health insurance, so they would just pay their premium, surely? So no one would ever pay the full amount. Therefore we should be entitled to the same level of care and treatment as those who 'pay'.

In other countries??? This isnt about other countries this is about lowering the gestation age in this country! Also, they pay a premium but they still pay something, we dont pay anything here, our taxes dont just fund the NHS they fund a wide range of things from benefits to bankers bonuses. So I dont really know about other countries but here we get 'FREE' healthcare and thats why they wont lower the limit.
Its always about saving money, yes its not nice but its the truth, if we get it for free we cannot expect for them to do everything. Thats life.
I'm grateful of the care the twins got in NNU, I am pretty sure that it cost an absolute fortune keeping them there for the four weeks including the NHS paying for their formula until they turned 1 but they cant do everything. In reality however hard it is to believe they would save a 29weeker because the chance of survival is 80% whereas the survival of a 23 weeker is what 20%? Even all the technology around these days isnt going to change that statistic yet.

 

[indy and lara]

This should not be an issue about money. The NHS spend money on MANY things.And there is wastage of money too. While the pot of money is finite, there would be an uproar if they did not help those whose conditions are completely self inflicted so why should my baby not have been helped? We do pay taxes and the NHS is not 'free', just free at the point of use. Those are two very different things. The argument of whether our tax contributions would cover SCBU care or not doesn't stand up for me. This could be said of the majority of major treatments/ surgeries on the NHS.

I also do not agree that the decision should lie with doctors alone. My own belief is that most parents would not choose to carry on with treatment if the prognosis was so very poor but that we need to actually try. I don't think the parents of 23 weekers are asking for intervention after intervention at any cost, just for something to be tried. Family members are the ones who make decisions as whether to continue treatment for loved ones on life support/ those who are critically ill. All very emotional decisions but I would never suggest that this decision should be made by doctors alone so why should the decision about 23 weekers completely ignore the wishes of the parents?

Gestation alone should not be the decising factor. Dating is not 100% accurate as we surely all know. Also babies vary in birth weight and development so I would always argue that these decisions should be made on a case by case basis.

So what would we have done? We wanted intervention for our 23 weekeer son but were told 'no point'. Had there been intervention to help Bobo we would have known very quickly that his prognosis was very poor and we would have chosen to let him go peacefully. Not to drag on his suffering. I believe this is the choice that almost all parents would make. The catastrophic brain damage caused by his cord accident was not known until after his birth, without this he may have survived. All we wanted was to give him a chance and to be allowed to make those decisions ourselves. Surely that is not too much to ask?

 

[Tasha]

I dont understand this not a life at any cost. Firstly money wise 0.009% of the NHS budget is a tiny, tiny figure, personally I would rather get rid of some management than decide that these babies are not worth fighting for cos they cost to much.

But also how do we know if babies are going to be that 20% around the country who survive or 10% without disabilities at 23 weeks, or if they are at some of the more specialised then that 30% who survive or 15% without disability, or at UCL that 45% or 22.5% if we dont give them a chance?

And lastly surely the fact that UCL have can have almost half of 23 weekers surviving, and almost a quarter of 23 weekers without disability shows what can be done? It shouldnt be a lottery where your location means that a) if they will fight for your 23 weeker or b) whether that 23 weeker gets to survive because of 'better' care.

 

[indy and lara]

How sad that the life of a child is thought of in terms of cost and cutting expenditures. Surely if two adults were fighting cancer, the doctors wouldn't think of stopping treatment for the one with a lower chance of going into remission so they could spend more to treat the one with a higher chance? It shouldn't be any different for babies. IMO.

Well unfortunately it is thought of like that because we get free healthcare if we paid it probably wouldnt be the case.

I am not saying one childs life is more than another childs life but a baby born at 27/28/29 weeks has a greater chance of survival than a child born at 23 weeks thats why the 24 weeks is in place.

There is a point where we have to realise a baby at a certain age will have a poor quality of life and to keep them alive would be (for me) selfish. Just to add I am not calling everyone selfish just myself if I was in that position.

Like I said my girls were prem at 29 weeks and they were very lucky.

We do pay. Our health care is not free.

Through our taxes? We have the NHS. Whatever we pay in taxes wouldnt cover the cost of a baby spending 10 weeks in an NNU.

No, but in other countries where they do pay the costs would be covered by health insurance, so they would just pay their premium, surely? So no one would ever pay the full amount. Therefore we should be entitled to the same level of care and treatment as those who 'pay'.

Its always about saving money, yes its not nice but its the truth, if we get it for free we cannot expect for them to do everything. Thats life. .

We do not get healthcare for free. If we paid no tax contribution towards it that would be the case but we do. A universal healthcare system works because we all pay something towards it but do not all 'use up' our contribution.

Could you just dismiss it as 'that's life' if your loved ones were not treated due to financial considerations? What if smokers with lung cancer were disregarded or chronic alcoholics? Or what about the people who get surgery after crashing while speeding? The list goes on. It is always worth remembering that when you decide that it is okay to withhold treatment due to financial reasons it does not always happen to someone else. One day it may happen to you and yours and then it is not so easy to disregard.

 

[Tasha]

Even all the technology around these days isnt going to change that statistic yet.

But it has in UCL, like I said almost half are surviving. Plus the only way to get more to survive is to keep fighting for them, to learn more about these tiny babies and develop new technologies.

Years ago 29 weeks would of been considered too small, too early, the way we moved forward from that is the above.