Premature babies are bed blockers, according to RMC

[Callisto]

Can't quite get to grips with this: \link{http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2006/03/27/nprem27.xml&sSheet=/news/2006/03/27/ixhome.html\here}

Couldn't it be argued that in treating these premmie babies more experience is gained so that the survival rate will eventually rise for babies born very early.

Have to say, if the resources are limited then it makes more sense to ensure babies with a better chance of survival get the care rather than the touch-and-go cases, but a blanket ban ala holland on treating these cases seems wrong.

The point surely, is not whether this baby or that baby is 'more' viable - a 28 week or even full term baby can have much worse disabilities than a 24 week baby - but how we give ICU and special care units more money so there doesn't have to be a choice. Including Charlotte Wyatt and other babies with the same sort of problems and life expectancy in this discussion is just clouding the issue.

Callisto, I totally agree with you that more money is needed, however I am just going by my personal experience and I have to say if I hadn't had the best possible care for my baby because another baby who wasn't expected to survive had the one intensive care bed available then I would feel very agrieved.

No-one should be put in the position to 'choose' who is more viable. And I also believe it is due to research and pushing the limits to 23 - 24 weeks it means my baby got the opportunity of life where 10 - 15 years ago she would have died.

I do believe that cases like the Charlotte Wyatt case make it harder and harder for Dr's as parents expect more and more miracles. I also watched the programme a couple of years ago, and have seen how Holland do things, and I still think there needs to be discussion on this subject. Not necessarily hard and fast rules, but certainly discussion.

Every area of the NHS 'should' have more money, better cancer services for all, better this and that. But it is not a bottomless pit, why is keeping a prem baby alive for a few weeks/months at a cost of £1000 A DAY better use of the NHS money than giving a women with kids dying of breast cancer herceptin?? These are questions I am glad I don't have to answer.

Indeed, caligula, or even giving more money for nurses so that elderly , demented people don't end up half starved because there isn't the time for them to be fed. It is the most awful of circumstances and the rally don't envy the doctors who have to counsel parents on this issue

sorry, Crunchie!

You said it much better than me crunchie.

Thuis made me extemely uncomfortable. For starters what is meant by "serious disability". My social circle is one where unfortunately I know many of the local children with serious disabilities. I know lots of birth injuries, a few genetic conditions, quite a few children who have been brain damaged by things like meningitis, but premature births? Nope none. I do however know a boy who was born at 24 weeks, spent the first year in hospital (and was in and out during his second) and now aged 7 has no special needs whatsoever (except a lazy eye).

DS1 however (full term, strapping healthy baby) will cost a fortune because he will need 24 hour care for the rest of his life. His education costs something like 10 times that of an NT child, and he will never be a taxpayer. What are we going to do in the future when he gets ill? Refuse to treat him so we can distribute the money to someone normal and worthy. Because if you start making decisons about whether a life is worth saving, based on cost alone then its not a very big step to take. Sounds like eugenics to me.

Sorry, but doctors are not gods, they don't know which children will be brain damaged (which incidentally doesn't rule out the possibility of a fulfilled life) and which will grow up to be taxpayers (after all its all about money isn't it), and as they are not gods they shouldn't be acting like they are. They should treat all patients in their care equally.

I'm with jimjams here - whilst my babe needed early medical intervention - 3 weeks care in icu/scbu and then three weeks with her two open heart surgeries - she is by and large a very healthy little girl - yes she has down syndrome - but she does not need so much more care than any other child. So interesting to see that she is classified 'disabled' but looking at her future - she has the capablilities to be a very independent young woman needing very little care.

When dd1 was in ICU/SCBU there was a little fellow there who had been born premmie and they struggled to keep him alive - I could not imagine them saying to his mother - well my dd1 had a better chance of survival so they would withold his care and focus on my dd1 - what right do they or I have to say my child is more worthy of care than her child. Although as I willing had a child with heart defect and sn - I would be a different class altogether according to most medical professionals .

SueW- the thing is though these reports always go on about the disabilities of these children (or handicap as the spokesman for the paediatricians said- which is an almost offensive term in the UK) as justification for letting them die. The inference is that these children are very severely disabled - and I want to know what they mean by that. I want to know the extent of the disability of these children because ds1's school takes a lot of the most severely disabled children from the region (from 3 LEAS) - and I know other families from support groups (there's 2 other PMLD schools in the area) and I have yet to meet one who's problems are due to very early prematurity. Of course it happens- but I really want to know how many of these children fall into the PMLD bracket.

Eidsvold- something that worries me though is if this sort of thing comes in and is seen as acceptable its a short jump to refusing to treat your dd because she's "handicapped" (sorry but I really struggle with a spokesman for a bunch of paediatricians using that word). The UK already refuses heart transplants to adults with DS - because of their DS (ie a decision not made on any other medical grounds).

The figure they give is something like 11% with no disability- but I'm wondering whether the little boy I know is included in the 89% because of his squiffy eye (corrected with glasses).

INcidentally even if the figures showed that say 50% of the children born at this satge who survive did fall into the PMLD bracket I do not think that is an acceptable reason for refusing care, for all sorts of reasons (not least because I'm uncomfortable with the idea that having a PMLD must equal a life not worth living).

My ds was born prem and he needed treatment in scbu, when I was in labour there were discussions about moving me to another hospital because there was no room for him in scbu, they even tually decided that they woould move things around and squeeze me in!!

After the birth ds was taken from me straight to scbu and I was then shown to my bed, we were miles apart, they were actually putting me on the ward with all the other mums who had there babies with them. I was devistated and cried myself to sleep, I'm a first time mum and never thought that I would spend the first night away from my baby. This went on for 3 nights and then they found room for me in the bay for scbu babies mummies right next door to them.

Now 3 of the babies taking up the room in scbu were very very prem babies or should I call them bed blockers, I know for a fact that no matter how angry and upset I was about the whole situation I would never ever have been telling any of those parents that there babies were worth less than mine.

This scbu by the way is now being threatened with closure because of funding.

The only thing I would have changed about it all would be where they made me sleep, I think it was really insensitive to expect me to bed down with glowing new mums and there babies, when mine was all alone in scbu.

jimjams -- the statement is nothing to do with paediatricians, it's the obstetricians and gynaecologists. Not that they should be using the word either, but it's less shocking.

ah read to quiuckly Leah- really think that any representative of UK drs shouldn't be using the word though.

That must have been dreadful flutterbee (being on the ward with your baby is scbu)

I can see your point Jimjams and I totally understand your veiws. I am NOT categorically saying that Dr's should not treat under 25 weeks, which is the situation in Holland. But I feel there should be discussion around teh subject. I know FOR ME I would have made a pretty hard choice IF it happened (which it didn't)

I was lucky, although my baby still holds the record (I think) for one of teh smallest babies on MN, she sailed through and is one of the lucky ones. But I did see babies die, and it did make me wonder whether the invasive nature of their treatments was the best thing for them.

I wish more money was availabe for everything, but unfortuneatly medical science has in some ways beaten the tax man. IYKWIM. When teh NHS started there was so uch less Dr's could do in all cases, now with longer lives, advances in science etc etc it is struggling to sope. Our taxes haven't risen in line with what is needed, and people begrudge paying more than they do.

I don't know the answer, but although the language in this reporting is plain wrong, it is a subject that should be open to discussion.

Flutterbee, I am afraid that is normal, to be in a post natal ward with mums with their babies (usually they do try to give you a private room)

I was in the delivery suite (in a labour room) for 3 days, then went to the post natal ward - luckily in a private room. I met another girl there going through the same experience and we clung together for support. BUT we still heard other mums demanding to know WHY THOSE TWO have private rooms, and why can't they!! Tankfully the midwives stuck up for us. We had 10 days on the post natal ward, about 3 floors away from our babies, then we had to move out. Luckily we were housed in a Ronald McDonald house around the corner.

But the day after my baby was born I was not allowed to see her, because the mudwife couldn't be bothered to wheel me down in a wheelchair and they wouldn't let me walk or DH push me!!! Finally my brother came in, unhooked me from all my monitors and took me down, I had only seen her for 10 mins the day she was born and this was 24 hrs later.

That story was off subject for this topic, sorry.

But the discussion has to be factual- and if the disability argument is to be used- a handle on the severity and complexity of the disabilities these children are left with has to be established. Also the wider implications of deciding to not treat because there is a risk that the child might be disabled - even severely has to be considered. Especially- if- as this resport suggests- the objection to disabled children is that they cost more. If you start down that route where on earth do you end up?

Bloody hell crunchie- that is truly shocking (not being allowed to see your baby).

Flutterbee's point about whose baby is worth more is spot on. If I'd had a very prem. baby, then I would have wanted everything possible done to save him/her - but I would have wanted the decision to continue treatment or not to be mine alone, and not the doctors using some blanket law that if it was under 25 weeks they would treat. Imagine your anguish if the baby was 24 wks and 3 days - as a parent, you wouldn't want anyone to go through that.

Now, if something happened to either of my children or husband, I would expect doctors to treat them - not worry about whether potential disabilities would render them too costly. It's too sad that we even think to bring a cost element into it. There are many other areas which we should look at first as potential areas of saving for the NHS.

How prem was your baby crunchie?

She was a 27 weeker, so had about 80% chance of survival, but she was only 1lb 12oz, so was about the size of a 24 weeker should be.

I only saw one baby smaller and she was 1lb 3oz, she looked like a pocket sized doll!

Well im shocked, my ds was 9lb so i cant imagine how small she would have looked. Where did you get prem clothes.?

Flutterbee, your post brought back memories for me, I'm a bit teary! I did have a private room but had to keep going in and out of the nursery to wash my breast pump and would keep bumping into the happy mummies changing their (to me) huge babies. As well as that late at night they kept playing this song which went "Goodnight sweetheart, your Mummy is watching beside you" when my baby was 4 floors up on another wing of the hospital. I used to look up and count the windows to figure out where he was.
One of my neighbours had two prem babies one born at 25 weeks. He is in the same year as my ds2 in school and is a top performer in most subjects, far more so than ds2 who was fullterm. I feel that these very prem babies should be treated. With time and experience their survival rates will improve and their chances of having SN will reduce.

And even if they did have SN - it's not a reason to knock them off!