Panarama programme

[Uhu]

Did anybody else see this? Basically, researchers have found that 40% of premature babies will have special needs and now there is a debate on whether doctors should be doing everything they can to save babies born at the margins of viability, i.e. before 26 weeks. In Holland they have decided not to save babies born at 24 weeks or less.

This is very difficult subject, particularly if you are the parent of an extremely premature baby.

Considering abortions are allowed up to 24 weeks, should babies who are born this early be kept alive artificially with the knowledge that they may end up with special needs? I guess if it was my baby I would want the doctors to do everything they could to save its life but maybe, it would be better for doctors to provide an objective decision. What a dilemma.

I think we have to be careful that we do not end up with decisions based on some eugenics ideal but equally, doctors should be completly honest with parents about what the future could hold for them and their child.

I saw the last half of it. I know there is no way I could give birth that early without begging on my hands and knees for them to try and help my child. Having a child with sn isn't all doom and gloom. Hard work yes, but at the time of birth it's v hard to say what a child will be like in x years.

Dh and I said it smacked of eugenics to us, but from the doctors perspective it must be an incredibly hard decision to make as well.

From what I saw it made me glad that I wasn't living in Holland though, and that's not something I would tend to say about the place on the whole.

SN can be so varied that it would be impossible to know what was going to happen as the baby grew up. I know that when my ds1 was 2yrs old the future seemed pretty bleak. He was a totally uncommunicative little boy who would be so distressed that he would either walk round in endless circles or throw himself on the floor. 2 years later and he's in a mainstream school with very little support, chattering away and making everyone laugh.

I think this kind of policy is a slippery slope tbh. Which categories of people will doctors be refusing to treat next?

Snap Lou. I didn't see all of this due to NT teething boddler antics upstairs, but I am surprised they have been so ruthless about this in the Netherlands. If live-saving technology exists etc...
I found what I saw very thought-provoking and moving. The parents interviewed were so articulate and honest about their lives after the birth of a very prem baby and all the children were delightful.
I was VERY glad the professor (Dieter Wolke? didn't catch his name properly) made the glass half-full not half-empty analogy...SIXTY percent of the children in the study experienced no significant developmental delay.
My favourite moment was seeing NT young William with his learning-disabled brother Tom. Closely followed by Bright working so hard to press his button in his therapy session.

I am worried about the dutch laws re euthanasia full stop. Stephen Hawkins would have been eligable under their laws 30 years ago and I myself am eligable now......
Let's say for example I caught an infection, went into septic shock and ended up on a ventilator, it has happened several times in the last few years, so it is a possibility. If I was living in Holland my nearest and dearest could ask for no intervention, OR more frighteningly, if they thought I was a burden and we did not get on too well they could say that they beleived it was MY wish and it would be bye bye Bunglie!
There is a lot of controversy over there at the moment that some families are doing this re their old relatives so as to no longer have the financial burden, as they have no NHS.
I am therefore NOT surprised that they have these limits when it comes to neonatal babies. Mine were both delivered by CS, very prem. and my ds also had inter-uterine growth retardation. The Neonatal intensive care unit were brilliant, and there was never a question of not trying with regard to ANY baby, but this was back in the 80's.
I think the moment you start to impose limits on viability you are on an 'icy road' and a system is then open to abuse.
I am thankful I live in the UK, with an NHS and that 'Living Wills' are NOT yet legally recognised.
I like Panorama as a rule and did find this programme fairly well balanced but worrying. They did state that none of the UK doctors they spoke to would be happy for a legislation that imposed a limit on the age of viability and therefore the right to intercede.
My heart goes out to some of those parents, but every child deserves a chance and who are we to put a price tag on someones quality of life.

One important point I thought was made, was that if the state is willing to pay for the technology to help these children survive the state must also be willing to provide the (in some cases) high levels of support they and their families may need. Sadly, it doesn't seem to be the case ATM.

I thought that the point raised that by intervening to actively save the child they raised a duty of care for the life of the child was very pertinent in the case of Bright, who's parents had requested that intervention be withdrawn and were refused.

Moving and thought provoking

Goodness I missed that part of the programme Bootsmonkey. To disregard parental wishes like that in their situation is awful. I wonder if any of the health professionals who overrode Bright's parents' wishes are actually aware of his profound disabilities now...

God I thought this programme so sad - I looked at one child and thought that I would be happy if he were mine and another and thought that maybe the support should have been withdrawn but at the end of the day they are not my kids and to be honest I don't think I have a judgement on this either way I just think that I would want to be able to make the decision if I were in those circumstances without being judged!!

I really think that if I were in that sort of situation I would take a lead from what the doctors said.

Do think that them saying that 40% of children end up SN is not such a huge number - if it were 99% end up severly SN with no quality of life to speak of they could have had an arguement but there are 60% that are normal kids and 40% that have SN of a huge range!!

Ks, I had twins at just 29 weeks, not early by todays standards however I 'lost' one, but the other is a beautiful young lady now and soon to be 18 and doing A' Levels.
My DS had the IUGR, and was smaller than dd, but he was over 30 weeks. He has taken his A levels and the only 'problem' he has is a 'mild dislexia'.
If I am honest they were my little miracles as I did not think I could 'carry' children and I would have pleaded with the doctors to do ANYTHING, as they had been delivered against the odds and I just knew that no matter what I loved them the moment I saw them.

I missed this programme but I find this whole area very thought-provoking and moving.

I, too, was astonished at the Dutch rules about resus. Apart from anything else, you can't always be 100% sure of when a baby was conceived so how can they delineate exactly whether a baby is 24wks or not? I thought the Dr who said that what would be a disaster in one family wouldn't necessarily be so for another family was spot-on. He really seemed to understand that there is no one-size-fits-all in this situation.

As for Bright - the family get just 6 hours help a week with him, fgs. No wonder they wouldn't choose to save another prem baby, they must feel so disgusted at the way they have been treated.

Has anyone read Susan Hill's book about the prem birth of her second daughter? It's absolutely heart-wrenching.

I think one of the important functions of this study was to reveal that prematurity is more difficult than we usually think when we see stories about ' miracle babies'. 1,200 premature babies were born alive in Britain and Ireland that year. Of that 1,200 just 300 (one in four) survived to go home. At age six years, 40 per cent of those 300 children (120 children) had 'significant' disability or learning difficulty. An unknown proportion of the other 60 per cent may have minor disabilities that weren't recorded in the top-line results of the study.
I think, as others have said, that if it was my baby born at 25 weeks I'd be begging the doctors to save him or her ? but that might not necessarily be either possible or, in the end, the best thing for that baby. Can't imagine how anybody manages to make that choice though. That poor woman in early labour with twins, with the neonatal team all standing by ...

Edam with you 100%
I wish I was as good as you for putting things down in a succinct way but still with empathy. You have summarised it v.well in my opinion.

I had a similar experience as Susan Hill.
I do not feel that love means you want your baby to live no matter what.
I was 21 when i had my daughter i am now 35,it took me 9 years to have another child as i was scared it is all so random.
My regret is that i was not there when she died at 3 weeks old i find myself envious of parents who can hold their child at this time.
What happens to babies does vary from hospital to hospital.My daughter was not that prem she was about 33 weeks.
It is vital that staff and family communicate as everyone has their own ethics etc.Ultimately the parents go home with a child and often receive no help at all.
It is a very difficult decision for family to make and also people can be extremely judgemental.
If any of this makes sense i will be amazed...sorry about muddle but this is just the tip of the iceberg as repercussions down the years,were the doctors right,were we right etc?

doobydoo, I think I understand what you mean. I am so sorry about your little girl. When my dd's twin died I was given the choice of holding her, but I could not. She was lying next to her sister in the incubator and my dd had her sisters thumb in her mouth. I felt that she (my dd) needed her twin more than I at that moment as they had been together for nine months.(they were mirror twins). I wish that I had held her but I still think that they needed each other more as after she died dd was restless and would not settle and needed a special 'beanbag' up close to her to help her even at that early stage.
I know it is painful and if you are like me you almost feel 'cheated', but in my case it was my decission, I can not imagine how you must feel not having that choice or being there. No matter what age you 'loose' them at it is painful, and nothing anybody says can make it better, so I would not insult you by trying. However it is true that 'time heals'. Nothing takes away the loss but it does get easier to cope with. In my case I have rationalised it that it was more important for her sister to be with her, but I don't know if that is true, but it makes it easier for me. I hope this makes some sense to you.
Love Bunglie XX

My twins were premature at 33 weeks and we didn't know what to expect or anything about possible problems in the future. We were lucky and they both survived and are perfectly healthy. There were a lot of questions we didn't ask of the doctors at the time because we didn't know enough to ask if you know what I mean. Looking back I don't think parents are given enough information to prepare them for any potential problems.

Bunglie I think you made a selfless decision ,and i think if it felt right then that is what you should have done.Sometimes the problem as the years go by is that we forget how we were at that moment in our lives,how we were feeling etc.It is very important to remember how we were then which lead us to make the decisions we did.I think it was an incredibly selfless,brave thing that you did and feel that for lots of reasons it will have helped others in your fam ily too.
I do agree with Daisy to a degree but i do not think you can prepare for anything like this do you?
People always say that pregnancy is not an illness but when i was training to be a paediatric nurse i saw one text book delivery out of 20!
I remember reading a book (Sheila Kitzinger)saying thaat contaractions are like waves breaking on the beach-um no i don't think so!
Having said that i do feel it would be difficult to prepare people for the other side of it.
I suppose we all just muddle through,hoping we are doing the best don't we?
I consider myself so lucky to have my son but i think i am an anxious mother(inside).
I do have the odd pang and want him to always be ok and never hurt or bewildered but i think thats quite normal(i hope!)

Hiya All

I had my dd at 29weeks but she was only just over 1lb so bit small for her gestation. I did not have a clue what was happening as I had an emergency C section and did not see her until quite a few hours later. It was all very over whelming and emotional, but as someone has already mentioned, no information was given to us, we just had to get on with it. I will say that the unit treated us very well and as she beame stonger let us do little bits to help out.

DD is now just over a year and doing good but we have had our ups and downs, been in hospital for periods of time etc aswell which is very distressing but hopefully now as she gets bigger all will be ok.

But back to the programme I found bits of this quite distressing and felt quite ill when the bit about Holland came up as they cannnot know whether they will have SN in the future from the first time they see the child surely when its delivered, I'm glad I live in the UK. But the whole experience has made me worry about whether it will happen again if we have another child.

Bunglie, I'm not sure this is the right place to post this point, but I had no idea your dd and ds were prem babies and your dd had a twin who died. God. Must make your situation even more... hard to find the words, really.
Sending you lots of

I watched this as well. As a mother of a very prem baby - 27 weeks - I wanted to see what was said. Unlike most of you here I 'almost' agree with the Dutch system, sorry. However I also know it is because the boundries of science have been pushed back, that my dd is fine.

In holland babies of 23/24 weeks are not recussitated. The programme featured babies of up to 26 weeks, for every day/week there is a better outcome. What the programme didn't allow for in their stats were the difference between a 23 weeker having long term issues and a 25.6 weeker IYKWIM.

40% of the surviving babies had severe disability, the remaining 60% may or maynot have had long term problems. One if the children had chronic lung disease, and some mild sort of learning difficulties, but he was in the 60%. He will still need a far greater level of care long term.

Most of the dr's were great, particulary the one who said what is terrible for one family would be OK in another, I agree there. But Bright parents were not given the choice. Once he was intubated the dr's could not turn off the machines as he wasn't 'brain dead', hence them saying the Dr's said the law prevented doing anything. It is such a gray area and one which if difficult to understand unless you have been there. Even going through it all, there was no question my dd wouldn't survive so we never had to make any choice.

Atthe start of the programme a dr said we can save these babies lives, but at what cost? Socially and Economically, the burdan falls on the family. So although there are the facilities to save the babies lives there is little/no support once you leave hospital - Bright's parents getting 6 hrs help. Surely this should be taken into consideration?

Like I say, if it wasn't for amazing Dr's like those on the film my dd wouldn't have lived, 10 yrs ago she was on the borderline of viability - abortion was at 28 weeks, she was born earlier than that. in 5 yrs time the results in this film could be very different, these were children born in 1995. I would love to know how children born in 2000 got on. I would love to know how babies born in big well equiped hospitals got on in comparisson to ones born in other places. I bet you'd find the 300 who did survive were all born in the bigger, better units. The babies who died were more likely born in more local places and then transferred. That to me is shameful

I didn't see the program, but have just read the commentary here, so am not sure what was presented.

I think every parent should have the right to resuscitation and critical care for their premie. I don't think there should be a blanket policy for non-resus based on an assumed gestational age. My sister's daughter was born at just 25 weeks (1 lb 5 oz) and is now a gorgeous 5 year old who is ahead in everything but height and weight. (Of course, those two things might be in her genes -- not mine, obv, but my BIL family.)

Quite honestly, this argument seems like eugenics done up in fancy words. I have strong feelings on this point pre-natally which I allow are my own and shouldn't be imposed on others, but to allow a child who has been born to die because of possible defects later in life is very disgusting to me. Every child would die without proper care.. none could live on their own.

This is one of the very few issues that I feel like I can speak for my sister. She was so happy when her daughter was born. Not because she was tiny and popped out in the amniotic sack, then had to be rushed an hour away to a hospital equipped for these things, but because it was a birth. A joyous occasion-- she had a daughter, albeit with a name longer than she was (seriously.. but that's another story). Anyway, can't speak for her because of that, but because I know her and the fact she refused tests (risks of miscarriage) for trisomy 18 when her second daughter had soft markers. She would have had her anyway. Her second has mild CP, but is doing great.

I guess it's where do you stop? Let a child die for whatever reason is too far across the line for me. Help those who can't help themselves.

I agree with JJ- and also didn't see the programme. I'm not sure that Bright's parents only receiving 6 hours of help is a reason to not save a prem baby- it's a reason for shaking up SS so that they actually provide support for disabled children and their families. I can't see that that can be up for discussion when we as a country can afford to fund a war in Iraq. If we can afford to fund killing then we can aford to provide families with support.

You're dead right about providing proper support for disabled children, Jimjams. But having seen the film, I'm not sure Bright had any quality of life at all. Completely helpless and unable to communicate although the people who worked with him at the swimming pool offered him objects based on which he looked at. My sister works with people with learning difficulties (and physical disabilties when the two go hand in hand), now with adults but has worked with children, so I thought her take on the programme was interesting. (She loves her job and the people she works for, has so much fun with them). She said although you'd have to know much, much more about Bright to judge his quality of life, from what the programme showed, he might be one of the very few people who doesn't have any enjoyment at all. She thought if she was his mother, she might think it would be better for him if he had died. And that's despite the fact that she is now pregnant with the baby she thought she'd never have (diagnosed infertile a good ten years ago). I'd expected her to be much more in favour of saving life at any expense.