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Premature babies are bed blockers, according to RMC

67 replies

Callisto · 27/03/2006 15:26

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}

OP posts:
getbakainyourjimjams · 28/03/2006 22:20

Did the hospital play that song??? sounds a bit insensitive. Must have been very difficult being separated from a tiny baby.

eidsvold · 28/03/2006 22:33

jim jams - that is shocking about adults with ds!!

There is a movement in the US for health insurance not to cover 'pre existing conditions' that were detected prenatally. So for us ( had we lived in the US and with this policy) - it would have meant that health insurance would not have covered her life saving cardiac surgery - it would be up to us to pay cause we knowingly had a child with that defect iyswim.

chipmonkey · 28/03/2006 23:00

Jimjams, I hope you didn't think I thought that they should be knocked off if they have SN. That wasn't what I meant. I just meant that if the medical profession get better at looking after the little mites, they'll eventually have fewer probs related to prematurity.

chipmonkey · 28/03/2006 23:01

yes, they did play that song! Every night at bedtime!

NorfolkTurkey · 29/03/2006 08:51

JJ - When I had my 24 weeker in Dec 2002, prem clothes were pretty hard to come by. Mothercare now do a fairly good range of 1-3 pound babygrows. 3-5lb babygrows are also very easy to come by.

NorfolkTurkey · 29/03/2006 09:04

When my DS was born in Dec 2002, he was 1lb 10. On the day I went into labour it was made clear to me by the hospital that their decision to treat and care for him would depend on how he performed in the first 5 minutes or so of him being born. Luckily he did very well and he was taken to the NICU.

However, things sadly went downhill very quickly. The head pead came to see we and explained, with the aid of scans etc that he had heamoraged severly both inside the womb and after he was born. A couple of days later I left for home (literally lived around the corner). I remember that shortly after I got home (it was dark) that at one point the lights dimmed and straight afterwards the phone rang and I instantly knew it was the hospital asking us to come.

They sat us down and explained that DS had deteriorated and and amongst other things that he was fitting and also his lungs were being damaged as they were having to give him almost 100% oxygen for him to breath. They explained that his chances of survival were so slim but the decision to turn off everything was ours alone and despite everything, they would if we wanted to, keep doing what they could for him.

We decided in the end to let him go as it just wasn't fair on him to keep him going. The peads had also explained that due to the haemoraging and scarring on his brain, he would have had severe cerebal palsy.

I am so glad that this was our decision and not something the hospital forced on us. I know I did the right thing. Sorry for the ramble.

crunchie · 29/03/2006 09:44

NT I am so sorry this happened to you, it is so hard to imagine having to make that choice. Although I said earlier down the thread I think I would make the same choice as you, until you are faced with it it is hard to know.

NorfolkTurkey · 29/03/2006 09:58

Exactly crunchie. It's easy to say what you think you would do but you don't know what you are going to do until you are faced with that situation.

Bramshott · 29/03/2006 10:21

This is such a difficult subject, and its so heartbreaking to see that there have to be choices like this, but unfortunately there probably does have to be some sort of cut-off, whether in terms of no of weeks gestation, or of the chance of survival, to conseve scarce resources for those who have the most chance of benefitting. My DD was born at 33 weeks and a positively enormous 4lbs 11oz, and we like many people, were faced with being transferred over 100 miles when in labour. Luckily in the end they squeezed us in (although like others, only on the main ward, along with lots of "but where's your baby?" comments from other mums), but I met others who had been transferred to and fro as the SCBU always seemed to be really full. I don't have any solutions, but sadly these things probably do have to be discussed and considered.

Sorry, I haven't put that very well! I think what I'm trying to say is that I'm very glad my DD had the care she did (and is now a strapping 3 yr old), and of course would still have wanted her to have that care if she'd been born earlier, but having been in SCBU and seeing the pressure they are under, there does have to be some sort of cut off between having a late miscarriage and going into early labour, however unpalateable that is.

getbakainyourjimjams · 29/03/2006 10:23

NorfolkTurkey- it must have been a terrible decision, but I think its right that it was your decision. Another reason why I'm against bringing in any legislation is because I think it will lead to more legal cases of parents against hospitals, and that;s not good.

Eidsvold - that is shocking! Mind you when dh joined his last firm we joined BUPA and they tried to refuse ds1 insurance because of his autism. I went slightly ballistic, contacted the NAS (who were very interested as BUPA were one of their sponsors that year!) and they did eventually agree to cover him - except ofr SALT/OT etc. Were you in the UK during the first Big Borther- the winner gave his money to his friend (an adult with DS) so she could go to America to get treatment for her heart condition- I thik she needed a transplant but may have that wrong- it may have been surgery.

FairyMum · 29/03/2006 10:29

A very difficult subject. It shouldn't be about money, but I do think we need to consider how much we want to put the little ones through.

crunchie · 29/03/2006 11:37

FM, that i the point IMHO, how much are we putting these poor babis through to give them a chance? And are we doing it for us, as parents? Aside from us who have had kids in NICU/SCBU who has seen the invasive nature of some things our children have to go through.

Some are simply sedated to be on ventilators, all have continual bloods taken, lines in, lines out. My 7 year olds feet and hands are tiny and I am sure that is due to her veins being shot to pieces, she has loads of pin-point scars all over her hands and feet from teh needles. Up to a year after coming out of hospital, if anyone held her foot as if they were going to put a needle in, she would scream and fight louder than I have ever heard (before or since). AND this is from a baby who had NO problems at all. She didn't have any operations etc.

I cannot imagine what other babies go through. And do wonder if, like NT, it is kinder not to put them through it. :(

NorfolkTurkey · 29/03/2006 12:18

Crunchie - I agree with you in that some parents put their babies through all this more for their benefit rather than the babies own.

I have spent alot of time in the NICU as my next DD died at birth at 26 weeks and my DD after that was born at 29 weeks and was in the NICU for 6 weeks. I saw some absolutely heartbreaking situations which kept bringing all the memories of DS flooding back. More than once I went in to find babies who were there one day and not the next Sad

I have to say that when making our decision about DS at no point did I think anything about him blocking up beds and taking resources away from other children as well as the monetry side of things. What parent would? All we wanted what was best for him and I just couldn't put him through it. It was not fair on him and he would have had no life at all.

Bramshott · 29/03/2006 12:21

NT - you sound an amazingly strong person. I can't imagine what you must have gone through.

staceym11 · 29/03/2006 12:45

i can understand the arguerment in this report, but the language used is inexcusable and insensitive. i am shocked!

eidsvold · 29/03/2006 12:55

yes we were jim jams - quite sad.

MumtoBen · 04/04/2006 21:32

The term "bed blocker" is widely used in the NHS and is also often used to describe older people who are waiting to go into a nursing home or have their house modified. It is very insensitive.

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