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.

Just watched this on iPlayer. My first baby was prem 34 wks so not a huge amount early at all, but only 1kg so we were in hospital a while. We were fortunate in that he had no long term problems, but it is a horrible situation to be in. My feeling is that it is unfair to place such a decision on the parents at a time when their head is spinning. You are such a state of shock, with very limited knowledge at that time. I thought it was very telling that ALL the medical staff said they would NOT want their baby resuscitated at that gestation. I know that when I was pregnant again, my biggest fear was to have an extremely early baby. My personal 'safety zone' was 27 weeks so I was glad when my DS made it to 31 wks. I think 23 weeks just prolongs the pain. Physical and mental.

MichaelaS no I honestly mean 21+5. I had to query it with my MIL and again with my consultant. They were surprised particularly that long ago but it was 21+5 and he survived somehow!

1lb 3oz was his birth weight and he was born at Poole hospital on the 24th September 1977. I'm so glad the nurses and doctors there persevered.

Yes, there are amazing stories, but the point was that for a huge majority that is not the case. We have got so used to being in control of all things and maybe this is one area where it is more humane to accept the nature of the situation. For any other highly invasive, long-term, painful treatment a 10% chance of just survival would not be considered a good outcome. Shouldn't the experience of the medical staff have some bearing? It seems to me that the Denmark cut-off of 24 weeks is more compassionate for ALL involved.

I think survival rates for 23 weekers also depends on the hospital you are in. Some more readily resuscitate 23 week babies and therefore have more experience with them.

I know the hospital my girls were born in has a strict policy of 24 weeks and in fact I know someone who had a baby at 23+6 there and was left alone, no doctor present, no help given at all. They did say that at one time they had aggressively tried to help ALL 23 weekers and just didn't have any success with them. The senior neonatologist there said their survival rate with 23 weekers was much less than 10%. I have to admit, I will never stop wondering if my daughter would have survived if in a different NICU as she was in very good condition at birth and doctors had high hopes for her after their initial doubts.

Geepers, were your twins born in Southampton? My neighbours little boy was born there at 23+2 and is now 5. He does need oxygen sometimes still in the winter and has learning difficulties, but he is lovely.

I don't think anyone can make a decision about what they would or wouldn't do until they are in the situation. I was not asked whether or not I wanted my baby to be resuscitated, it was an emergency situation as I was bleeding heavily with a cervical suture in. There is no way I could have made a decision as I was pretty hysterical and on pain killers. My little boy was 23 weeks, 6 days and 19 hours when he was born - 5 hours short of 24 weeks. If there is a hard and fast cut off of 24 weeks like inDenmark, should he have been saved? It just isn't that simple.

Sorry, that should say 'should he have been resuscitated?'

amyandIsabelle, that's really amazing but i'm afraid i'm still sceptical - having seen what it takes to save a 24 weeker today, the technology was not around 34 years ago. Without a confirmed dating scan between 8 and 12 weeks its much more likely he was 4 weeks gestationally older but with a growth problem (IUGR). in 1977 viability was generally around 28 weeks and it would be quite suprising to find a 25+5 baby surviving to be honest! :)

sorry, I don't mean to offend but even today this would be a globally significant medical event.

Do you have more information - like how long he spent on a ventilator? Did he have treatment for ROP or NEC? what is his current lung function like? I'm fascinated!

betterwhenthesunshines - there are lots of other treatments offered where the chance of saving a life is only 10% or less, and the objective of treatment is actually to prolong life even if that life will be painful and of lower quality than average. Many cancer treatments, for example, are about extending useful life rather than seeking a cure. For example (from cancer research UK) it looks like Oesophagal, lung and pancreatic cancers all have survival rates under 10% at 10 years, yet we routinely offer expensive active (rather than palliative) treatment in most cases - from surgery to chemotherapy and radiotherapy. Treatment is painful and can mean quality of life is much reduced for the patient - but it's a clinical decision taken jointly between the doctors and the patient, weighing up what's medically possible, what the benefits would be and what the risks or burden of treatment might be.

Ultimately, everyone has a 0% survivability rate, its just a question of time!

www.telegraph.co.uk/news/worldnews/1543388/Worlds-smallest-surviving-baby-is-going-home.html

This article says that this is the first survival before 22 weeks. But obviously not all are perhaps reported.

Midori my twins were born in Poole then transferred the next day to Portsmouth. They would have gone to Southampton but they didn't have two incubators available.

In todays Guardian this is interesting "Claiming that only one in 100 survives without significant disability is stretching a point, quite frankly," says Neil Marlow, professor of neonatal medicine at University College London and chief investigator of the Epicure study, which compares the survival and outcome of over 1,000 babies born between 22 and 26 weeks in 2006 with those born a decade earlier. "We know from the 1995 data that 11% were surviving then, with half of these ? 5.5% ? free of significant disability. Survival has doubled across the country since then, and it's widely known that survival in 2006 at 23 weeks was 20%, with half of these with no serious disability."

www.guardian.co.uk/commentisfree/2011/mar/10/premature-babies-price-life

It was very upsetting and two things stood out for me. If the age was moved to 25 weeks the statistics for survival would be quite considerably higher. How did we get to deciding that 23 weeks was the cut off point? The statistics speak for themselves - forget the money - parents are given hope that at 23 weeks their baby could survive and go on to live a normal life - this is despite overwhelming evidence that they wont, they will in fact struggle on possibly for weeks until eventually dying, extending the pain and suffering for the parents and the child. I do not speak from experience so I am aware of my ignorance when making this comment, but if I went into labout at 23 weeks, before watching this programme, I would have expected to give birth and hold my baby together with my partner, until the baby passed away with no chance of treatment. I honestly thought when I was pregnant that 32 weeks was the - will they/wont they survive point.

With regards to the money being spent - the point was quite clearly made in the program - if we didn't spend the money on this the NHS would have more money to treat those unfortunate babies and children with a better chance for survival and offer them further support.

I thought it was awful that the nurse could not turn around to the young couple last night and basically be honest with them, as soon as she mentioned 'switching off machines' she had lost them. Who wants to be the one who said 'turn my baby's life support off' for goodness sake.

As painful as it was too watch it was very informative and has sparked much debate on the internet which can only be a good thing.

sherbertpips - the program did not make any point about saving costs to provide services to the others. It only costs £10m a year to try to save the UKs 23 weekers. Or 0.009% of the NHS budget. A drop in the ocean.

The post above yours shows survivability without significant disability is actually much higher these days (although it differs by hospital quite a lot)

and noone in the program suggested turning off machines AT ALL. the doctor (not nurse) was talking about not intervening if the baby worsened - i.e. not giving cardiac massage if the heart stopped. Neither the doctors nor the parents were proposing turning off the machines - something that is only generally suggested if there is severe proven brain damage such as brain stem death.

For those with older children - a question - if the were diagnosed with a treatable terminal illness would you put them through say 2 months of intervention which would cause discomfort, pain (although pain relief would be available) and might not work for a 20% chance of them surviving? Honestly? and would that money be wasted if it didn't work?

Really interesting to read the guardian response jellybean thanks for posting the link!

edit to the above: the people on the program (including the narrator) concluded that resuscitating 23 weekers may be doing more harm than good, NOT that it costs too much for the good but instead that the short suffering of the 91% who died(as reported) was not worth the 1% who live disability free plus the 8% who live with mild, moderate or severe disability.

I think its a very different picture if you say (as the guardian interview does) that 30% survive in a good hospital, of which only 15% have a moderate or severe disability.

just watching this now, terribly upsetting, reminds me of so much but i am a 'lucky' one with a 27 and 30 weeker.

Sherbertpips - the 22 to 26 week (gestation) and survival issue has to do with the growing and developmental stage of the lungs of the baby.

It is the reason that women suspected of being in premature labour are injected with painful necessary steroid drugs: to help mature the babys lungs.

Very thought-provoking programme and comments. I do believe personally that the abortion limit should be lowered on the basis of even 10% survival of babies at 23 weeks (I know the most recent review of this concluded the opposite, that survival at 23 weeks was still so 'low' that they didn't want to change the limit).

I am pro-choice but want to see clear blue water between the limit for abortion and the viability limit. These are clearly 'babies', not 'fetuses', at this stage and their parents are right in wanting them respected and treated as human beings.

I think the cost argument is rather spurious, if a child with cancer only had a 1 in 10 chance of surviving a given surgery, you wouldn't argue this is a poor use of money to treat them, or that the odds were so low you would just give up. Children, rightly, are prioritised as patients as they have their whole lives ahead of them and the potential to experience so much more.

I think that until you have faced this situation for yourself you couldn't possibly comment how you'd react. It's easy to give a hypothetical "well I wouldn't want a disabled child.....". Not so easy when you are looking at your sick baby. Believe me, I've been there. Most women would sell their soul for a doctor to tell them that their baby will be fine.

Sorry, this is a rather emotive post.

Having taken the decision to ask Doctors treating our premature baby to remove ventilation after 29 days, I can say that it is possible, as a parent to have that discussion. Granted I often think about the decision but know it was the right decision for our DS. There is unknown/unquantifiable pain for prem babies - but you can see it - silent crying when intubated is heart-rending to watch. You need to factor that in to your assessment of the programme's conclusions.

And in response to the negative comments about the ventilation tube being 'forced' into the baby's throat - well forced is probably a poor chice of word but essentially that is what the doctor is doing. In our second premature DS case, this life saving action also probably resulted in a rupture in the blood vessel from heart to lungs and a very swift death.

It is an emotive topic. I have experienced 3 babies in special care over a 10 year period - the reality - most (whatever prematurity) had a harrowing time in special care at one point or another, a number died, some went home seemingly unscathed and some went home more or less disabled. The baby that went home last night was not unscathed - possible left side weakness, on oxygen and possibly with a feeding tube. All these babies are loved and cherished, but for some their life journey is somewhat shorter than might have been anticipated.

This programme opened many eyes as to what the parents, babies and staff have to deal with in such units.

My view - the staff are the experienced ones and we would do well to place the balance in their hands and allow them to guide parents in their decision making rather than having to leave parents to bear such a burden.

At the beginning of the programme I thought all babies born at 23 should be given the best possible treatment to survive, and that medical staff should be doing the best that they can to help their survival. As the programme commenced, please correct me if I am wrong, all the babies featured on the programme died, it was the first time I have seen very premature babies in real life, and it seemed cruel that they were stuffing their tiny mouths with breathing apparatus. It just seemed hopeless, these babies looked like little chicks, and I ened up agreeing with the Dutch Dr and the Nurse whose dd was born very prematurely.

I dont know what I would do if I was ever in that situation, I really dont.

I really enjoyed watching this last night....so sad though when the tiny baby died. At 23/24 weeks its such a premature baby, its amazing that they can keep them going at all.

So what do you all think about trying to keep them alive at such a short gestational age ?
Obviously if it were my baby i would want them to try and save it....as we all would.
But it begs the question as to whether it is right / appropriate if they end up with so many disabilities . Plus they can suffer so much with all the treatment/operations and drugs etc.
Very very few seem to survive and are perfectly normal.
Its normally always the case that they have many health problems.

geepers My cousins 23+5 premmie was in Portsmouth.

What is the 'normal' weight of a 23/24 weeker?

Cousin was only 15oz!!

I can't imagine any parent having to first deal with your baby being born this early but secondly having to make the decision that will no doubt leave you feeling helpless no matter what you decide. As a nurse I can understand some of what was said but as a new mum you would be in turmoil. I could never make the decision and hope I never have to. I take my hat off to those that are strong in these situations. I break down and cry at alot of things. I cried so much last night after watching that. I get emotionally involved which is no bad thing. I disagree with the fact that the woman was commenting on the money which could go to chronic conditions for example which I disagree with. That takes account for people that end up in hospital through their own selfish life style. The one thing that really upset me was the thought that the babies were in pain.

My twins weighed 1lb 5 and 1lb 3, and the other 23 weeker inat the same time also weighed 1lb 3. But there were later babies who weighed less than mine.

Mumbar, when was she born? Is her name Matilda?