23 Week Babies - anyone watching?

[deemented]

About to start on bbc2 now.

My boys were prem and my friend has a 23 weeker.

Tissues at the ready.

I've namechanged for this and I expect very few people will agree with some of what I say.

My son was very premature - but not 23 weeks. The day he was born I honestly thought he would die. Partly because I never really expected him to live after a complicated pregnancy following a previous miscarriage and I had been warned I was at high risk of late miscarriage at 21 weeks. I never had the hopes of a sucessful pregnancy or the dream of holding a baby.

When my son was born the doctors did what they did on the basis of implied consent. I knew that was likely but had never really thought about what that would entail. I did not have a say in his treatment, or the decision to resusitate him at the point of his arrival(as he was over 24 weeks). He then went on to do well, although he is disabled. However not a day goes by when I don't think it might have been better to withdraw treatment at the point of his birth. I love him dearly, but I cannot be sure that allowing him to live was the best thing for him. I believe it was, and obviously I now have a son who is in my view a person, when again, in my personal view, he wasn't really when he was born.

Further if I had known at an earlier stage I was due to have a baby with his prognosis I might have decided not to continue with the pregnancy.

I hope what happened was the right decision but I cannot be sure, and as such personally I am not sure that saving extremely premature babies is always or even often the right thing to do. It does depend on the prognosis, but also on the views of the parents, and most particularly the doctors who are less emotionally involved. We had to trust the doctors at the time, and I do trust the doctors who treated my son. If I hadn't he may not be with us. However if they had recommended withdrawing treatment on the basis of his prognosis I also believe I would have trusted them then too.

I guess what I am saying is I don't think there can be a blanket policy on this. I also don't think cost should be a factor. My son has had a lot of care on the NHS. However I will have contibuted the cost of his care in the taxes I have paid many times over. That is the point of the NHS it is free at the point of use and it is paid for out of general taxation. If it wasn't I would have had insurance which would cover the cost of his care, but why should my family have been covered just because we are wealthy when many many families would not, and are brought to financial breaking point due to a premature birth. Despite therefore saying that I do not always agree with treating these babies, I am very relieved that we have a system where cost is not the decisive factor. Because it should not be a factor at all.

I haven't watched the program, didn't know it was on. But can only add this:

DS2 was born at 27 weeks and had to have severe resuscitation due to hypoxia (oxygen deprovation). He spent his first 5.5 months in NICU, then home on oxygen, tube feeds etc etc. Regular return to hospital for virus, infections, physio etc etc. Back in PICU at Xmas when it became clear that the neurological complications he had suffered at birth combined with his prematurity just meant we had come to the end of the road. There were two options - continuing constant medical intervention or letting him go in peace. We decided for the latter. He died 6 weeks ago, at home in our arms.

I am forever grateful that he was resuscitated at birth and that we had those 10 months and 3 weeks with him - it meant that DH and I knew we really had tried everything, but we simply couldn't see him suffer anymore, as much as we loved him, he deserved peace. He had not been resuscitated I would have always wondered - what if he had been alright etc etc.

So I disagree with wannabe that 'Because as parents it is simply not possible to remain detached in order to potentially make the right decision for your child iyswim.'

Having said all that, if I was pregnant again and my baby suffered hypoxia and needed severe resuscitation (unlikely because we won't be having anymore), I would not want it as the risks of neurological problems are just too big.

My first son was born at 23wks 10years ago this summer. I still remember it like it was yesterday. He was born alive due to premature labour but it was hospital policy not to treat before 24wks. He lived for 10minutes and died in my arms-while the doctors and nurses did nothing.

what an emotional programme :(

so sad holly didnt make it, but fab that maltida did and hope she over comes any problems she may have

i felt sorry for heather, what will happen to her when her parents die?

i think all babies born should have a chance to try and live, if just under 24 weeks

what i hate is the fact that abortions can still be carried out up to 24 weeks :(

my heart goes out to you all who have lost a child

I heard about the show on the radio lbc and they were saying that with the cuts should they stop trying to save 23 weeks old baby as the quality of life is usually not very good. Its a hard subject but I will always go with my heart and not my head with this every child should have a chance its a hard upsetting topic.

I agree with Mishapen that if we need to make cuts we should stop treating those who have "done it to themselves" by smoking, drinking, not eating healthily or keeping fit. I say that as someone who doesn't exercise enough or eat properly - I know the risks and should take responsiblity for my actions. We could also stop doing elective cosmetic surgery for non life threatening conditions. There are many ways to save £10m on the NHS budget less controversially.

my heart goes out to you southcoaster, I remember you sad story on Bliss.

By the way, just a suggestion.....it seems a lot of you feel really moved by these stories and are grateful for your happy healthy babies (myself included!) You could consider showing that gratitude financially by giving a small donation to Bliss (www.bliss.org.uk), Tommys, your local hospital NICU, childrens' hospice or disability support group (cerebral palsy is the main physical disability affecting prem babies in the long term). Money, volunteering time, help campaigning - there are lots of different ways to help. Many of these charities are doing excellent work in exactly the fields the program suggests are needed - i.e. research into preventing premature birth and practical help for those affected in the long term by severe disability.

What I found watching the documentary last night was that the emphasis was on mortaility, disability and cost effectiveness.

Using words such as 'forced down the babies throat' when showing one being intubating was as close to poor programme making as you can get - very melodramatic (I guess this makes better viewing). I have never seen anyone in an adult programme having a tube 'forced' down their throat.

The scenes of the two babies that died should not have been shown imho. Private moments at the end should have been left to the parents and families. Ok, they must have given their consent to let them be shown but I feel that again, it made better viewing (sadly).

The PCT manager was speaking out of turn saying that she would like to divert the money used for 23 week neonates to say, cancer patients. Why? Why are these people considered more deserving? This was not explained. The only difference is that those people have a voice. Babies do not. The parents have to be their voice for them.

The figures used in this programme relied on statistics published in the EPICure study back in 1994. Convenient methinks. I doubt those figures are true some 17 years later.

I'm utterly flabberghasted that this programme has been allowed to air. If I had motor neurone disease and wanted to die, I wouldn't be allowed to ask to be euthenised and instead, would have to endure a poor quality of life until my body eventually gave up. Not so with a baby who has that decision made for it.

There is no question that the decision to end life, if that had to be made, should lie firstly with the parents and then with the doctors. Under no circumstances should it be placed solely in the hands of the healthcare professionals as suggested in the programme. I fear that parents who are already vulnerable are bamboozled with worse case scenarios when it is usually the case that no one really knows what will happen.

My DD#2 was born at 24 weeks (23+6 by my dates). Weighing 1lb 8oz. She is now a lively toddler (3 in May), normal size, loving nursery, sat on my knee currently counting to 10. No disabilities. Given the opportunity, I am sure that many other babies would grow into healthy and happy children. We just need to give them the chance.

Well said johnworf

I'm glad your DD is fine

::::Applauds johnworf::::

I think the best and most important point was that we should be trying to prevent such early births - it may be unpalatable but it is true that we have the highest rate of prem birth and the highest rate of teenage pregnancies. We need to educate children and teenagers about sex and children in a much stronger way. It was really interesting how they showed the mum and dad with 9 children between them and the mum and dad who were police oficers. This is not necessarily my opinion but they (programme makers) seemed to have deliberately chosen a coulpe who were 'professional'and a couple who weren't to show the differences in understanding of their babies' situation. The young couple didn't seem to have any idea of what resucitation really meant and kept talking about 'switching the machine off' whereas the police officers asked more questions and seemed to be much more aware of the risks. Just an observation.

I think the message that came across from the medical staff was the desire to try to decrease the rate of these premature births in the first place ... did you see the cigarette smoke being puffed out from those signs saying 'Smoking damages your baby" ... doesn't it make you want to weep?

Surely the point of mentioning the previous children of Simone's parents was to show the fact that she was 23 with four children already. It illustrates that we need to educate our young people at school about the dangers of unplanned pregnancies, for both the mum and baby. This country has still has the highest rate of teenage mums in Europe. I ask myself if Simone's mum can be supported and encouraged into taking more care of herself and planning any further pregnancies, and the dad to take more responsibility in his contraception (did I hear it right that he has five children with different partners, before Simone came along - he can't be much older than the mum!).

Of course its terrible when a woman spontaneously goes into labour critically early, but the factors that can be changed such as life style and education of young people should be part of the picture of prevention ....

I really hope I'm not being victorian here ... I've beening reading all your posts and thinking hard about this ...

x post!

"It's funny how you don't notice the perm look in your own baby" You are so right Geepers

Johnworf - am I glad that you have written that the figures are from a 1994 Report. The figures given in the programme for (mortality rates for 23 weekers) did not tally with my very personal experience.
It just did not compute and I thought I had lived through a Very anomalous bubble.

The programme makers went out of their way to choose, and show, very specific types of couples I feel.

I'm filling up just reading this thread. Both my babies were full term but my friend's GS was 23 weeks. Fortunately came through and is now a healthy toddler. The family spent almost every waking minute with the little one and got to know the other parents. Heartbreaking when a little fighter didn't make it. They all grieved.

For my own GCs, last was born three weeks early as had stopped growing in the womb. Mum had pre-eclampsia and we'd the very real threat of loss or damage to DD and baby should full eclampsia occur.

Our story ended well but my heart goes out to the folk that my friend told me about and to the parents on here. Wish I'd a great big cloak of compassion and love to throw around and encompass you all.

The figures also did not tally with what I was told a year ago.

My understanding was that 50 per cent survive, 50 per cent of those will have moderate disabilities such as vision problems/need hearing aids etc. 25 per cent would be more seriously effected with cerebral palsy etc. And 25 per cent would lead a normal life. Much better statistics than those quoted last night.

ladymystikal are you trying to tell me that my babies do indeed look very premature? ;)

I agree wholeheartedly with Ariane and Johnsworf that there should not be a price on life.

The coldness of viewing it in terms of cost effectiveness would make a good Dickens novel. And how can the medical profession advance knowledge of treatment and care for preemies if everything possible and anything that holds promise can't be tried because of some artificial limit to what can be done that comes from a set of priorities that has nothing to do with values and everything to do with price.

Love to anyone who has gone through this.

For what its worth I was told about a month ago by DS consultant that for babies of his gestation (29 weeks) 40% would have problems of some sort. Some minor - eyesight, hearing etc, some more major. I think a lot depends on what the doctors classify as a problem, for example my ds has cp, which is hopefully mild, as he's only a couple of weeks delayed on gross motor skills at 9 months corrected. I was also told in a different area we would not have the diagnosis until after he was walking as it may not effect him at all but that he would still in fact have cp....

"I say that as someone who doesn't exercise enough or eat properly - I know the risks and should take responsiblity for my actions."

Exactly my thoughts MichaelaS, and I say it as a DW of an ex heroin addict.

My husband was born at 21+5 amazingly 33 years ago. He was given a less than 1% chance of survival. He was then given a bleak prognosis with all sorts of problems forecast. He's a gorgeous man, not overly tall I admit at 5ft9" but nothing unusual as his mum's only 4ft 11". He was told he'd never have kids (we have a five month old boy conceived naturally after only four months of trying!) The only 'problem' he's ever had is with his hearing (partially deaf) which may or may not be connected to his prematurity.

I can't even imagine what his mum went through when he was born.

My own daughter (not his, from a previous relationship) was born at 32+5 and I was terrified as she was tiny (4lbs 3oz). She's been 100% fine too.

I can't imagine wanting to give up on a baby however tiny or however slim the chances. If doctors and his mum had years ago I wouldn't have 'my sanity' (my nickname for my hubby) now and I wouldn't have our gorgeous baby.

just imagine if we were in that situation with a baby so tiny dont know what id do

Geepers : lol, no!! my own daughter was born at 30 weeks and to me i didnt notice the prem look, but i could spot a prem baby of other mothers a mile off. btw, your babies are very cute! :)

AmyandIsabelle do you mean 31+5? I dont think any babies in the world have survived below 22 weeks. the rate at 23 weeks now is pretty low and at 22weeks is so rare as to feature in neonatology publications. either that or perhaps his mum got the dates out by a month? :-)