To save or not 23 week babies...

[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'.

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.

My comments were in response to your claim that perhaps if we paid things would be different. I only made a point regarding other countries because they are an example of a different health care system. My point is that we DO pay. The NHS is funded by taxation and taxation alone, so while we don't pay individually for our treatments, we pay collectively.

My point was that we deserve the same treatment as those who pay directly, as although the NHS is free at the point of use, we DO pay with our taxes to ensure that.

 

[Tasha]

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?

100% agree with this

I just wanted to give you some

 

[Laura2919]

When the twins were born they spent time at 3 different hospitals. The one they were born at was a university hospital and the capacity of their NNU was 12, they had exceeded this by 4 and then another 2 with my girls. They didnt have the nurses and the care for them so they had to send them 70 miles away to a hospital in Kent, the care was COMPLETELY different, we were provided with nappies, cotton balls, everything we needed, at 8 days old they came back up to South London and spent time in a hospital 10 minutes from my home, it wasnt the hospital they were born at but we had to provide everything for the girls as nothing came for free there apart from the bottle teats and milk (obviously as they had nutriprem2 and its not available to buy) They spend their money in different ways but I also learned that there are plenty babies that are born early and they will save the ones that have a greater chance. But in reality the chances of survival are greater at 25+ weeks. To this country and those who run it it is simply about the cost and the amount of neo natal space.
I am honestly not trying to hurt anyones feelings but thats the way they look at it.. It was mentioned at least twice in the programme.

 

[Tasha]

But if we dont fight to change that attitude then who will? It should NEVER be just about the cost or statistics that a politician in some room some where reads about, it should be about that baby and the individual chances.

 

[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'.

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.

Did I say it was OK?? No I didnt. I said that thats what this country is looking at and the statistics show that it may be a way of saving money!
And you dont know my history so I'd be a little less quick to judge..

 

[Laura2919]

But if we dont fight to change that attitude then who will? It should NEVER be just about the cost or statistics that a politician in some room some where reads about, it should be about that baby and the individual chances.

But to a politician who hasnt been there to understand thats all it is going to be about.
If they were to reduce it where would it be acceptable (sorry for my choice of word I honestly cant think of another) to let a baby die without medical help?

 

[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.

Did I say it was OK?? No I didnt. I said that thats what this country is looking at and the statistics show that it may be a way of saving money!
And you dont know my history so I'd be a little less quick to judge..

Oh for goodness sake, I am not getting into yet another argument with you.

I did not say that YOU thought it was okay. I think that you clearly know that I was talking about us all, as a society, deciding that it is okay to stop treatments on financial grounds, or to use finance as a reason to withhold treatment. Of course YOU personally do not have that power. I am also not sure where I am judging either but hey ho.

 

[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'.

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.

Did I say it was OK?? No I didnt. I said that thats what this country is looking at and the statistics show that it may be a way of saving money!
And you dont know my history so I'd be a little less quick to judge..

Oh for goodness sake, I am not getting into yet another argument with you.

I did not say that YOU thought it was okay. I think that you clearly know that I was talking about us all, as a society, deciding that it is okay to stop treatments on financial grounds, or to use finance as a reason to withhold treatment. Of course YOU personally do not have that power. I am also not sure where I am judging either but hey ho.

I'm pretty sure you said could YOU just dismiss it if it was YOUR family member... Hmmm..
Anyway I dont want another argument with you either. We dont agree end of!!! on many things...
You quoted my post not the other way round...

Nevermind...

 

[indy and lara]

Why don't you just decide to change all my yous to we. It doesn't actually change what I said but hey, no case for arguing about it then.

 

[Tasha]

But if we dont fight to change that attitude then who will? It should NEVER be just about the cost or statistics that a politician in some room some where reads about, it should be about that baby and the individual chances.

But to a politician who hasnt been there to understand thats all it is going to be about.
If they were to reduce it where would it be acceptable (sorry for my choice of word I honestly cant think of another) to let a baby die without medical help?

Which is exactly why the decision shouldnt be left in politicians or doctors hands, because it shouldnt be about that. If it was all about cost and statstics years ago then now we wouldnt be fighting for 26, 28, 30 weekers. It would just be accepted that this babies came early and that was that, but times and technology change.

As for when it is 'acceptable', I obviously dont have the answers, but I do think that it is an individual thing, one size doesnt fit all.

With Honey they dated her two weeks less than I knew my dates were, they wouldnt listen nor change them, when she had her post mortem it proved my dates were right. Now if I had her at what they said was 22 or 23 weeks, really she would of been 24 or 25 weeks, so my viable baby would of been allowed to die just because their dating was wrong.

 

[AP]

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

I agree. How are we ever going to know? Obviously we have living 23 weekers in the world now so medically the world has advanced again.

Again, like I've said before, i believe it should be done by a case by case basis.

I feel strongly about parents should given the choice. Not being made to go through with intervention if they don't want to however. But if, after discussion, there's that chance, then why not?

This whole factor of disabilities drives me nuts. Alex had a Grade IV brain bleed at birth, more commonly seen in 23-24 weekers. This can cause disability. But at what scale? We don't know? there's 23 weekers who don't even suffer a bleed. But because of her gestation we were basically told "this is Alex, deal with it".

Then there's 23 weekers who weigh more than my mates 26 weeker. Again, that 26 weeker is given the chance!

I know enough 23 weeker mums/moms from BnB, Bliss, through friends and online overseas. That's enough for me to believe. Screw money. The government pishes out money to the work shy what's money in comparison to life.

I think about the 23 week mums a lot just now.
How hard it must be to listen to this recent debate thats being thrown everywhere just now? How it must feel, to listen to people out there who believe their babies shouldn't be given a chance simply because of a stupid little thing called money?

 

[Hayley90]

I haven't read everything, but i am pro-life. So yes. I believe babies born at 23 weeks should be rescusitated (SP?) if there is a hope in hell it will work... even if its a 1% chance, that is a 1% chance that someone's little baby will have a life. I think the decision should be in the parent's hands... some wont want the heartbreak of trying and failing, others wont want the needles and tubes... its not one size fits all. It should be case-by-case i think. But overall, i think if the parents wishes are for their 23 weeker to be resucitated, then they should be.

Look at the babies who have survived... i'm a great believer in medical science improving with challenges. If you dont try, you'll never learn.

 

[midori1999]

I'm not sure why people are so quick to believe 'facts' put forward in a TV programme when they are actual facts which suggest the programme was incorrect in several areas.

The programmes bases it's statistics on the Epicure study, done 15 years go, yet the same professor involved in that study says that the programme was incorrect. Odd then that people still choose to believe the programme. (with an obviously biased journalist, the programme was pretty badly made tbh)

The programme stated that survival rates have not increased in the last 15 years, so we are at the biological limit of when babies can be saved. Again, not correct. Survivial rates have at worst doubled in those 15 years and at best improved more than four fold. Also, in Sweden they have as good survival rates for 23 weekers as we do for 24 weekers, which again, shows we can improve things in this country.

As I said, if we choose a cut off by gestational age only, do we then not resus a baby that is an hour to two too young that is also showing very good signs of life and making a good effort to breathe by itself? There isn't really a cut off point, some 22 weekers are helped in fact, precisely because dating gestational age isn't accurate and some babies indicate at birth they have a chance.

The other thing that really bothers me about this debate is the 'quality of life' arguement. Who are we to judge for another person whether they have quality of life? Just because we can't imagine ourselves living like that and having no quality of life, it doesn't mean someone else can't have. There are lots of children at my son's school (for severe special needs) who are severely physically and mentally disabled, including things like Cerebral Palsy. Some are in wheelchairs all the time and have very limited use of their limbs, if at all and some in addition to that have limited or nor speech. Some even need feeding tubes (and I am talking at age 10+). Do they have quality of life? You bet they do! They take an interest in all around them, enjoy things, laugh, choose what they do and don't want to do and make friends. They are happy and surely that is the most important part of life? Yet I wonder how many people would see these same children in Tesco and think they have no quality of life? We are often too quick to judge.

 

[AP]

The other thing that really bothers me about this debate is the 'quality of life' argument .

same here. No one, not even mum , can tell how a preemies life will turn out. Our docs told us Alex could have cerebral palsy. And we'd need intense physio. And no-one would say "but maybe not". Which was all we needed to hear but clearly they are all instructed to cover their arses and tell you worst case scenario that they know of.

Honestly we pulled these docs aside several times and one of the head docs too, they all said the same.

Alex is 20 months. Her biggest problem? Eating. That's it. ( for now, touch wood, we STILL don't know)

Point I'm making is, no-one, not even the smartest doc, can say for sure what the eventual outcome would be. Therefore leaving the decision in the parents hands is the only logical way.

 

[redpoppy]

As I have previously said I think it is the individual parents decision but all facts and stats should be made known.

I just wanted to say that my own mind which didn't even know anything a week or two ago has gone towards not resuscitating. It's a HORRIBLE decision for anyone to have to make and I don't know what I would honestly do in the emotional moment of the situation if God forbid I ever had to make such a decision. But I suppose I believe that there is an element where I wouldn't want to be resuscitated if I were in an accident where those were the stats (and even though four fold sounds good those stats are still not that impressive for me personally although I respect those who think otherwise). I've already told my OH enough times that I wouldn't want to be kept alive by machines for very long at all and with those types of stats I think I personally wouldn't want anyone to save me. I realise many pro-lifers are religious but it's actually my sense of spirituality which would feel that I would prefer to move on. And I think many people may feel the same way and not because of anything to do with money or cold hard facts but just of how they would prefer to be treated themselves.

No one can say how that baby would feel or want but as the genetic parent you have a heavy burden and only you have to live with that responsibility and consequences (be they emotional, mental or spiritual) and so I firmly believe it is a personal choice and that everyone should be made aware of all the facts as early as possible.

 

[nkbapbt]

As a mom of a 23.3 weeker...I have to admit I have been avoiding BNB (because I live in Canada I haven't been able to see it..and almost no one I know is talking about this..thankfully...as I am almost 23 weeks pregnant again as well...with a cerclage for IC) since this show was posted all over the forum. It's extremely hard to read, but I do respect every one's opinions at the same time too.

When I was induced to deliver our son after three days of labor, due to infection..the neonatalogists gave us three options: 1. do nothing and allow our baby to pass away peacefully 2. give him palliative care and see what happens and 3. do everything to save his life. We picked 3. But they warned us despite every thing he likely would not make it, and if he did there was a VERY high chance of him having disabilities. When he was born he born he had an Apgar of 3 and 7 (which is admittedly very very good for a preemie of any age actually), and was not resuscitated.

Not long after birth they did a routine head ultrasound to look for brain bleeds (IVH's), our son had the worst possible kind a Grade IV IVH. We were told he would at best have cerebral palsy, learning disabilities, emotional and behavioral issues. This was at best. They urged us to remove him from life support after a very painful hour or more long meeting.

They quoted stats about brain bleeds, his gestational age, the drugs they gave him...the infection I had (chorio) and if you added it up it was over 100% chance of issues...terrible ones.

For a week they pushed us to remove him from life support. They gave us worse news when his bleed resolved (it basically soaks back into the brain) and left "holes" PVL in his brain matter. They said this sealed the fact he would have issues.

To cut this post short...he turned "two" corrected (his age from when his due date should have been) on Feb 16th. He has zero delays, zero disabilities/issues (though we know there could be things that crop up in the future such as learning related issues), he does have a feeding tube in his stomach...but this has nothing to do with what I mentioned above. This was caused from a surgery to his heart which caused a paralyzed vocal cord (very common with cardiac surgeries, to people of any age), so when he swallows he aspirates some into his lungs (supposedly...we don't agree).

He met all his milestones on time, he signs, knows over 50 words (learning more and more each day...today was backhoe and motorcycle!), knows/says basic sentences, some colours, some letters and what letters he doesn't know he knows the sounds they make, he loves to read, draw, he adores animals, is gentle, loving, caring, funny and smart.

No one would ever guess he was born at 23 weeks, let alone early. He has always passed his development assessments at the NICU follow up clinic a few months ahead, in all areas...especially fine motor and gross motor (which is ironic since his PVL and brain bleed affected the movement part of his brain).

The bottom line is...it really does not matter what a doctor tells you, they could be 99.99% sure your child would be disabled (ours were!) and still be wrong. They have to give stats and what they saw in textbooks...or even in real life. But every single preemie, especially 23 weekers, prove these doctors wrong every day.

In the end we just followed our hearts and our son's lead. If he had ended up going down a different route, we would have dealt with that. We were prepared for whatever his version of "ok" was.

As others have said, it's heart breaking to watch your child in pain...being poked...getting some times hourly heel pokes to test blood gases, surgeries (Lakai had 5), and more. You ask yourself a million times if you are being selfish, if you are doing the right thing.

I know now we certainly did.

Our son does have scars on his heels so thick from the heel pokes that his heels are tough like leather, scars on his hands and feet from IVs, a nasty scar on his back from his heart surgery....but he has only had three colds since leaving the NICU with no other illnesses or issues. I can say with almost 100% certainty that he bears no emotional or mental scars from the NICU.

 

[AP]

nic, i have been thinking of you, worried about you through all this talk. I know you havent seen the programme because of where you are, and i refused to watch it myself
Lakai is proof that we should have the say and opportunity.

 

[Tasha]

Nic, I am so sorry that this is hurting you to read, I cant imagine Thank you for sharing yours and Lakai story, I type this through tears and am think after reading that how can any one think we shouldnt fight?

Just to add before anyone says, I know we are all entitled to our own opinions, I respect that, but I just dont understand the we shouldnt fight opinion.

 

[nkbapbt]

Thanks Tasha and Sandi.. It is tough but what is being said is certainly not remotely as tough to read as something Ive seen on other forums..that's for sure!

The hardest thing for me was the "what if", what if he is ok? WHAT IF. I couldn't possibly allow him to pass away without knowing, it would have killed me. Is that selfish? For sure. But I did research too, I made myself as educated as possible. I read story after story about 23 weekers and brain bleeds (I read only one I would call 99% positive, over all the internet is NOT the place to read positive 23 weeker/bleed stories (but interestingly enough, I actually know MORE 23 weekers without high grade bleeds than I do ones with)). Certainly I was scared, wondering if I could handle it (my husband and I did talk about it, but we decided we needed to come to our own conclusions, as well as one together). I was so sure I could, that even if my husband could not and left, I would be ok....terrible I know..but you must prepare for every type of situation.

CP sounds a lot more scary than it is, as its a blanket term for SO many things (it does not always mean the worst possible outcome, it could mean as little as your child's left hand is affected and even then just slightly...). And sadly doctors really drive home the scare factor with preemies and the what if's of their possible issues. They make it a lot more negative than it is, which is their jobs of course. Its our jobs as parents to decide what we can handle and what we cannot. What we want for our children and what we do not. I know more preemie parents than friends I have (almost!) and their children range from totally "ok" (hate that word!) to having serve CP, the latter are bright, healthy and wonderful kids. Some have walking aids, hearing aids and such.

But I can say this for certain, not ONE preemie I know is a vegetable (sorry for being harsh). None have no quality of life, none are unhappy kids either. NOT ONE.

I do know 2 that are extremely disabled and will likely never be fully functioning adults on their owns, however here's the kicker....they aren't 23 weekers. One is a 32 weeker and the other is a 35 weeker. And their parents adore them, they are happy, smiling wonderful kids!

I think the most common myth with premature babies is that gestational age matters...sure for some things it does. But I know more 30-35 weekers who have more breathing issues than 23-26 weekers...I know more 26-29 weekers with brain bleeds that resulted in terrible issues than 23-25 weekers...nothing is set in stone.

Sorry for ranting...Ive been bottling it up clearly!

I also want to add something.....if all the reading people do about preemies is online, they will almost certainly walk away from their computers, 1. scared 2. believing there is NO hope 3. full of negative stories. I found it extremely hard to find positive stories (even here, until just recently there was no stories about Grade IV IVH's at all, let alone positive ones...now? There is nothing but positive ones! Alex...Lakai....) about babies in Lakai's shoes. My husband made a very good point at the time, that parents of 23 weekers with positive outcomes are out enjoying their babies...not posting online. At the time I thought he was crazy...but now? I agree. When you dig, you will find these parents posting..but it's rarely in searchable places. I know I stopped posting as much once Lakai was past what I felt was his "danger zone" for issues cropping up. I just enjoyed him instead.

 

[Every Rose]

I can't comment without being unbiased as my daughter was one of those babies born before the cut off point so she wasn't helped & I had to stand back & watch her die knowing that she didn't even get a chance to fight

this is a really upsetting subject for me obviously

Same here. I couldn't watch the programme because I knew it would hurt me too much.

It's all very well to say that you would do this or you would do that but unless you have been there, sitting in a hospital room being told your baby is alive but will die and they are not prepared to do anything to even try and save her then you don't know.

Before that I would have said that I wouldn't want her to be born to a life of disability and pehaps if I'd been given the choice at the time I would have made the decision to let her go based on advice about how severly they believed she would be disabled she might be.

But to not even be given the choice is unbearable. I would have given my life to save hers and although she was small she survived for longer than some babies born at a later stage who weighed more and who would have been given a chance.

To watch her moving, opening her mouth as though she wanted food and see her waving her arms around, seeing her so alive and knowing they were just going to leave her to die was something indescribable.

If we hadn't been so focused on spending the time we had with her I would have been screaming at the horror of it, that they could watch a living baby die because they felt she wasn't worth the effort.

Especially as just a few months before her birth I had given birth to her brother and he was stillborn.

It was like something from a nightmare to me. I lost one baby before he was even born, he was dead before we knew anything was wrong.

And now I had a living baby nobody wanted to save.

I couldn't bear to watch this programme and hear other parents talk about their babies, perhaps born earlier or at the same time as mine (22+3) who had been given a chance and survived even with disabilities because it would have been a torture to me to see what might have been.

Who are we to say that someone with severe disability would be better off dead, better off left to die than be given a chance or that the parents who want to take that chance are selfish?

When you are there in that room you just want someone to at least look at your baby and try, even if they then say there is no hope or that it would be kinder perhaps to let the baby go.

I'm glad that other parents get to keep their children, I'm glad that any other baby survives when mine didn't because babies shouldn't die. I want those babies to have a good quality of life and I think it would be unimaginably difficult to know that your baby is severely disabled and living a life of pain and isolation and operations because you were 'selfish' enough to want him or her to survive their premature birth.

But it kills me that mine was never given the change to live her life and these debates in the news are hard for people like me because they are played out by people who have never been in our position and all too often done without any understanding of what this is really like.

I hope I made sense with that.