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.

That's my comment on that bottom of that blog page btw michaelas I gave him the link as I thought it pertinent to the overall discussion.

Sorry, my link was to comments.

Geepers

I read your blog, and even though I know how it turned out I was still in tears reading it.

I have no experience with prem babies. Both mine were late and both times I thought they weren't going to make it (different problems in labour) but nothing like any of you had to go through.

I don't know where I stand on this. My feeling is, if there's a chance then it's worth going through the treatment. However, I'm a bit uncomfortable with causing the babies pain, and god it does look incredibly painful. But the parents of children who have survived would say it is worth it. The ones who didn't, maybe also.

The programme I thought was too negatively balanced.

I agree with them though that work needs to be done on preventing premature births. Although before I get flamed, I do understand that sometimes there is no lifestyle etc cause.

this lady is an amazing survivor - not from premature birth per se, but from an abortion at 5m pg. Luckily for her she weighed about 2lb (I'm quite sure that birthweight must make a difference to survival chances) but she wasn't meant to survive the procedure.

The video is a bit evangelical for some perhaps but I do believe, as someone else said, that the abortion limit needs to be reduced to give "clear water" between viability and non-viability, with some exceptions for severe life-threatening/terminal conditions that would mean the baby stood next to no chance of survival even if it made it to full term.

I probably couldn't have watched that programme even if I had been in the UK, I would have been too distressed - feeble I know but there you are.

So :( for all of you who have been through this.

Hi, Haven't read the whole thread but wanted to add my tuppenceworth.

I watched this and I believe the most important point was made by Heather ( 21year old survivor). SHe stated that if you are going to save these babies ( of which she was one) then you need to ensurte the services are there to suport them throughout their entire lives- how true!

I think the recent debate is aslo a bit narrow minded. What a bout the children born at term who require a lot of medical intervention and stays in NICU? Many of those poor wee mites don't make it either. I am talking as a parent of a child whose prognosis was that he would not survive til birth. When he did I was told he wouldn't live a month and then was told he would have no quality of life, would never walk or never talk and not even a little doublt in there, the docs were so sure. I had to fight to have them save him. He is now a walking talking happy little man - Yes he has medical issues due to very unique abnormal internal anatomy etc but he has a great quality of life...........

What is perhaps poignant about this is that he was born in Holland. I have expertienced 1st hand the lack of respect for life that exists in Holland. And bewfore anyone says they'd like us to adopt the Dutch attitude when it comes to saving or not saving children's lives please be aware of this.........Euthanasia is legal in Holland. It also applies to children. It was legalised in Aug 2006 which is lucky for my little man who was born before the law changed. In some cases parents have to go to court to try and get a court order to stop the doctors from giving their precious child a lethal injection!!!

No-one had any expectation of my DS and he was verey very poorly and wasn't treated properly at all which is why we came back to the UK. Difficult for my hubby as he is Dutch. We came back here and DS blossomed! Yes he still has periods when he is unwell, has surgeries etc. But developmentally he has come on in leaps and bounds. Academically he is on a parr with his peers and his sense of humour is amazing. This has all been in fluenced, I believe, by the fact that everytone here has expectations of him, not just us as his parents.

The Dutch legalised Euthanasia for financial reasons, and Dutch person will confirm that for you. Not as some humanisitc was of ensuring people don't suffer. It is about reducing the monet needed to care for elderly and ill/disabled people.

Disabled people are still more often than not, institutionalised and kept out of sight. Attitudes to disability in Holland are similar to the attitudes in this country over 20 years ago! Do we really want to look to the Dutch in relation to how we care for our vulnerable children and adults? I think not!

We have family in Holland and in general the people are very nice. However if we are ever in Holland and my DS needs to be hospitalised then he will be flown back to the UK if at all possible. There is no-way I will be in the position of having to fight a doctor who thinks his life is so worthless he should just be put down!

Will get off my soap box now. xx

Changebagsandgladrags Thank you for taking the time to read the blog. Very occasionally I will go back and re-read what I wrote and I have to say it is scarier reading it now, than I felt at the actual time of writing it.

Particularly when I read the parts where Joe's ventilator settings were maxed out and he was onnmassive amounts of oxygen I realise how touch and go it was. At the time I just had absolute faith that they would be fine and never really considered the possibility after the initial few days that things could still go badly wrong. The nurses were great at just taking everything in their strides and always saying NICU babies have ups and downs but they would let me know when to worry.

Shaz - thank you for posting that - very enlightening! And quite . I am very pleased for you that your DS is doing well and I hope he continues to do so.

Bumperella the problem with dismissing cost-based arguments is that the NHS, whilst offering a service on which you can't place a price, operates in a world where money talks. It cannot operate without money and money is a finite resource. One of the reasons we are in the situation we are, as a country, is that such organisations believed themselves to be above the laws of economics.

It is horrific to be placed in a situation where you have to chose between trying to save a tiny prem (or term) baby's life, knowing that the chances of survivial without the requirement for long term NHS involvment may well be small, or saving the life of a working adult with a family to support. Both situations are desperate but one has the benefit of reducing the dependancy on the state, maintaining the tax income etc etc. And that's how it works in bald terms. There is simply not enough money to go around and the choices have to be made somewhere. I don't have to make those choices and will always be grateful I don't but someone does and I don't imagine for one second that it's easy, that these babies (or whoever the deserving case is) are simply letters on a page.

I'm not trying to judge anyone for their choices. As I said in a previous post I've never been in this situation and hope I never will be so I can't begin to imagine how I would react, but I truly hope that what I've written does not offend anyone. I'm not trying to do that, I'm trying to represent the fact that cost does and will have an implication on any medical decisions. It shouldn't work that way but it does as the world we have created relies on money to make it work.

We think we are so far above the family in, say, Africa who pay for the strongest child to attend school rather than pay for the weakest child's medication. In reality the situation I have described above is the same - just on a socially larger scale. That family chose which child to back, which child makes the most economic sense to support. Again - a horrific choice to make. Essentially, life is cheap, wherever on this planet you live. Sad but true.

I agree with you - equality is one of the pillars on which democracy is based. Yet, resources are finite so where do you obtain the money from to pay for everything else?

Difficult choices must be made in order for society to function as we need it to. And it is simply not logical or even reasonable not to expect money to play a part in that decision making process.

Please don't think I necessarily agree with everything I write or think it's right or fair or that I've never had such decisions adversely affect me. It is, unfortunately, true.

BestNameEver - I don't think it's particularly polite to call anyone who thinks euthanasia might benefit the terminally ill and in pain "stupid". In fact it's bloody rude. Especially if those people have watched loved ones suffer and die in horrific pain.

Thumbwitch, I do agree that there are times where assisted suicide/euthanasia is appropriate. And I know for a fact that if my DS was suffering, his organs were shutting down and he could not be kept pain free I would cedrtainly welcome a way out for him.

My issue is with the docs having the final say when ultimately they often get it wrong. My DS is a good example of having a very poor prognosis, was going to be, at best, very severely disabled - and he's not. Had the dutch docs had the powers they have now, then, we could well have found ourselves having to go to court to stop the murder of our child....... and praying and hoping that the mudge foud in our favour. That's too scary to think about for me. As it was I had to fight ( my hubby was in pieces and if I'd been the same DS would not be alive today!) to get the docs to save my little boys life. This was after them trying to convice me from 20 weeks gestation to terminate! I am so glad that I am a strong willed individual. If I hadn't been the world would never have experienced the joy my son brings - he has touched many lives. How many more little lives have been snuffed out on the advice of a doctor who really didn't know the potential the child had. Everyone has the potential to bring love, joy and understanding to this world regardless of their ability/disability. In fact most of the people who bring pain and suffering have no disability what do we do with them?

xx

It's true that those who bring pain and suffering often have no disability. But your argument brings us back to what someone said earlier - for every success story there are countless babies who are disabled, who have limited or no quality of life, whose families' lives are ruined. There is no way of knowing how each case will turn out. And that is the crux of the issue I think. If my child was born at 23-24 wks and I knew it would end badly, I would not prolong the situation. If I knew it would end well I would fight tooth and nail for every procedure going. But I wouldn't know and much of our perception is based on the miracle stories we all read about and many of us have direct or indirect experience of.

I'm not saying I have the answers BTW.

Aw hey Shaz, I wasn't at all taking issue with your situation, nor do I think that Holland have it all correct. I was just cross that BestNameEver called people stupid.

I agree that euthanasia for disability is not acceptable. I am appalled at the idea of euthanasia for money-saving purposes. But that doesn't mean that everyone who has an interest in it is stupid. That was my problem.

Thumbwitch I know you weren't having a go at me - sorry if it came across that way. ust feel so strongly about this ( and my wee one wasn't a 23 weeker!)

Buttonmoon, I understand the dilemas of the medical profession, but the problem is that no-one can categorically say who will do well or not. My DS wasn't even supposed to LIVE, never mind develop into a happy, fun loving wee boy. The docs truly bvelieved that he would have 'no quality of life' - their words. He would never walk or talk ( not he MAY never walk or talk).They were very clear about his prognosis. So if I had listened to them and trusted them implicitly then I wouldn't have a gorgeous son because I would have either aborted him or would have agreed to the withdrawal of treatment.........

The one thing I have learned, in parenting a child with complex medical needs, is not to take the words of even the most experienced consultants as law. They are human and by the very nature of being human they make mistakes and do not always get it right. I trust my own motherly instict far more and have been proved right time and time again........ I even have a letter from DS's main consultant, addressed to any medic who sees DS and who doesn't know him which states that regardless of how impossible what I tell them sounds, they must listen to me because 99.999% of the time I'm right!

Suppose I am wondering why the whole discussion is only centred on babies who are born very early, and not all babies who are born with a very difficult life chance? Surely the same questions should apply to all?

We have been lucky that I am strong and able to challenge the ideas of the learned professionals involved, but what of the poor wee souls whose parents just can't do that...............Very difficult and emotive subject, regardelss of what your opinion is so hugs to all xxx

That's my point too Shaz - as I said earlier, drs don't always know who to treat and who not to treat, but there has to be some sort of applied rule.

And I agree that this is not simply about prem babies - again, repeated - this argument stands for prem babies, term babies with life limiting conditions, women with cancer fighting for expensive drugs, the list is endless.

It is a harsh world and sometimes difficult decisions have to be made based on the information that is to hand. I don't doubt that sometimes the wrong decision is made. I imagine that the guilt of wondering if you made the right decision in terms of switching off life support will never leave you. But nor will keeping someone alive and giving them a life of sheer hell. There are all shades of grey between those two options and in your case (as in the case of many others who've posted on this thread) it's turned out far better than expected. However, that is unusual, as far as I understand it.

I was crying within minutes of watching this show on Iplayer. I also found it rather disturbing the way the very private and heart-wrenching final moments of holly and simone's lives was filmed.....

I was born at 26 weeks almost 29 years ago, and am a completely healthy mother to 3 gorgeous, healthy children. I can't understand how anyone could suggest that it would be better use of resources and money to effectively stand by and do nothing to help a premature baby to survive. whether or not to keep on trying, is a different thing and a decision that I feel should be left with the parents (with advice from the doctors but no pressure either way), but every baby born deserves to be helped initially.

And yes, I agree with others who have said that there needs to be more space between the legal abortion limit and the earliest viability.

Shaz, you have given me pause for thought. I am in Belgium, rather than in Holland. I have been here 5 years. In that time, other than one child with DS in dd's maternelle, I have never set eyes on a SN child. In many cases of course, it is entirely invisible, but I have never seen a child in a wheelchair for example. Your post has suddenly made me wonder why that is.

I was 26 weeks and I was 2 lbs 10 ozs...I was to weak to feed and went down to 1 lb 12 oz and I died a few times. I developed double bronical pheumonia on top. My mum said very time she walked in the room the red light and alarm would go off (sorry mum). They could have stood by and let me die....thankfully not everyone has this attitude and they have a professional ethical code to stick too!
I don't remeber the pain or the tubes coming out of my head and feet etc...so don't think your hurting the baby as I know from experience I can't remember it but just glad no one ever gave up hope. I was let home at 3-4 months old weighing a healthy 5lbs:)

Portofino, that's very interesting. I'm afraid I dont know much about Belgian culture but is a worry when disability is hidden away. Does euthanasia exist in Belgium?

My M-I-L even made this comment when at my 20 week scan we were told that our baby would die but bvery very best case scenario would be that he had Down's ( children with Down's are still referred to as Mongols in Holland btw). Her comment was( in Dutch of course) 'Well that's ok. There's a place down the road from where we live and they all live there together and all go on holiday together. Isn't that nice'. You can imagine how I felt about that! And that was kind of typical of attitudes in relation to people with disabilities. I just couldn't believe that geographically Holland is so close to the UK, yet attitutes were so different.

It's the same with a lot of other things though and not jkust disability. It just seems that socially attitudes are like those here were 20 years ago. Child protection really didn't exist in any reconisable way when I lived there. Moved back here in 2006 and I do suspect that even if DS have been completely healthy I'd have felt the need to come back here once he got to school age.

xx

Shaz please don't spread untruths. Your MIL does not represent Dutch society. I really don't know how you can begin to think it's true but it certainly begins to explain how some misguided soul on mn was scared to move to NL because she thought her child would be euthanased.ffs

Alpine, Not sure what your experience of Holland is but I lived there and I can tell you that in terms of how diability is viewed there, there is widespread attitude, just like my MIL.I certainly didn't mean to offend and sorry if I have.

MIL didn't mean anything at all nasty by her comment( or subsequent such comments and I don't believe other people necessarily mean anything derogatory by their comments and attitudes) but my experience was certainly that social attitutes are very similar to the attitudes held in this country 20 years ago. And as I also pointed out this is not only in terms of disability but in relation to many other attitudes, language used, child protection etc.

Maybe I'm more sensitive to language and attitudes because of my backgroud in working with vulnerable (not disabled) children.

I am not trying to run down the Dutch nation, but simply to point out that there are huge cultural differences, particularly in terms of how 'quality of life' and 'sanctity of life' are viewed. I am sure not all Dutch citizen think this way, however my experience of a fairly wide representation of Dutch culture was as I explained it above. MAybe the Dutch have it right - who am I to say what is right or wrong? However living in a culture where I know that I may someday have to ask a Judge to rule if my son's life is worth enough for him not to be 'put down' just didn't allow me to sleep well at night.

Technologically the Dutch are way way beyond us, but there are aspects socially which have yet to catch up.

Re euthanasia.........sorry but it is legal and does happen. It is absolutely part of the reason we returned to the UK ( and hubby is Dutch) and we were afraid that should our DS end up in ITU again (which was very likely) that we would need to fight to have him saved as in their opinion, the docs were clear that he would have no quality of life when and if he grew up!

Yes DS was saved, but only because I pushed and pushed. I truly belkieve tht if I had been in a similar emotional state to my husband at that time and hadn't been able to articulate and fight for my son, then he would most definitely not be alive today. Yes I am grateful to the docs who did save him and a few of them were fantastic. However in the beginning when the important decisions needed to be made about save or not, the supportive docs were very thin on the ground. There was not an issue interms of language or understanding as I was/am fluent in Dutch.

The NHS is not without it's failings, but at least, for now I can rest easy in the knowledge that if my son's condiiton deteriorates that no-one is going to suggest giving him a lethal injection!

Sorry for going on about this, and definitely not trying to out anyone off going to live in Holland, but euthanasia is a reality there and sometimes the docs take that decision when it relates to children and if you have a severely disabled child ii is important to consider the potential consequences for you and your child should they become seriously ill while living there.

I live here and as you do too I'm sure you saw the tv programme "down with johnny". I also have friends with sn children. Perhaps your mil was lost in translation. I'm sure you're aware for example that the dutch word for a gay man is homo and it is not derogatory.

Shaz - I hope you are not seriously suggesting that in the Netherlands your son would be given a lethal injection if his condition deteriorates

AlpinePony, what is your point? Shaz has already said that she is fluent in Dutch, and what the fuck has talking about gay men got to do with anything regarding euthanasia?