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.

MichaelaS Your maths is a little out there.

I agree with Melina and I don't think it's about money but about suffering. Whilst the doctors talked about risk and developmental issues further down the line they didn't (IMO) explain this to the parents, or at least Holly's (imo) did not understand the implications of the big fancy-shmancy words. "I ain't turning off no machine" after it had already been said to her quite literally "this is not about turning off machines".

I think the doctors really need to put it across in laymans terms.

For the record, I live in The Netherlands and my baby was born prematurely (nowhere near 23 weeks) last year and spent a little time in NICU - I will forever be grateful for the team saving his life, but I would not have wanted to prolong any pain or suffering.

Heather was very humbling and I hope this doesn't sound trite - but is there an organisation anywhere which can match adults like Heather to families like mine who might be able to offer care after Heather's parents have died?

I'm going to watch later on catch up.

My cousins DD was born at 23+5. She is doing extremely well and has no obvious side effects from being so premmie. And is reaching all developmental milestones (corrected!) and some uncorrected.

Will get the kleenex on the way home from work ready.

'We found the mum of Holly to be quite selfish '

I find that quite upsetting. In what way is she 'selfish'? What if she had been through many many losses? (it didn't go into her background I don't think) I personally think she is very very brave and a fantastic mum. It is quite sick actually to criticise someone in a blase way going through such horror.

'

I must say that I agree with the Doctors, I think the Dutch have the right approach to this, why put those babies through unnecessary pain and suffering, it's quite simply inhumane.'

Very easy to say when it isn't your baby.

I think the problem with the suffering / "humane" approach is where you draw the line.... we routinely accept some suffering as long as it gives greater benefit (e.g. vaccinations are painful for a second or two but prevent nasty diseases later, smear tests are unpleasant but they save us from potentially fatal cancer later).

Its certain that a baby does suffer in NICU. But they don't remember it later in life, if they live. We should not cause suffering where there is no hope, but this is a 9% hope of living another 70+ years. It's a slim chance of a huge benefit. Compare that to the relatively short suffering of a couple of weeks in the NICU before you know whether a baby has a reasonable chance of surviving. Its a really hard call.

I do agree that some parents didn't seem to understand what they were being asked though. But others clearly did. In practise, the doctors are the judge of how much reliance to put on the parent's view, and they do not have to offer treatment if they don't believe it's in the baby's best interests. They need parental consent to give or to withdraw existing treatement, but they do not need parental consent if they decide not to offer different treatment. In practise it works fairly well.

AlpinePony can you explain what you mean by saying my maths is off please? 0.009% of NHS budget and 450 23 weekers per year in the UK comes from the Bliss website and EPICure survival rates are published. Some figures e.g. 9% and 1% are in the TV program, and the others I read on the Bliss message board somewhere but dont' have a credible source for which is why I said they might be internet rumour. :)

I think there is impact on the entire family. A friend of mine has had his family deeply hurt by the birth of his Down's son over 30 years ago. Their 22 year old daughter feels somewhat "cheated" from her life because she knows that her life is already mapped out for her and will involve looking after her brother - even though she loves him dearly.

Michaela My apologies. Your statement, to me, read that you thought there were 450 23-week babies born a year representing 0.009% of babies born in the UK annually.

As for Holly's parents - her mother said that the interventions made at the beginning had kept her alive for that first month - but, during that month any damage could have been done and now it was likely Holly would survive. There would not again be the opportunity to quietly let her "go to sleep". Damage done was already done and as she herself said "Holly's with us for the long run now".

I think you may be talking about Mathilda Alpinepony. Little Holly sadly didn't make it :(

Yes Mathilde.

Michaela's posts have been really interesting and thoughtful - thank you. And I'm glad to hear your son is thriving now after his frigtening start in life.

It was Matilda. Can you remind me which little one was Holly? The only other mum I remember speaking was Heathers and the triplet, the one who they made a point of telling us already had four kiddies. Did you notice how they never mentioned Matilda had a brother? funny that, isnt it?

Watched this on I player this morning. Shed a few tears.

I think I find the most upsetting thing to be at that stage, it is still ok to abort. If a baby can survive at 23 weeks outside the womb surely the abortion limit needs to be dropped.

I don't want this to turn into an abortion debate I just wanted to say that this is the fact that I struggle to get my head around the most IYKWIM.

It is such a shame that NHS bosses have to sit down and have these meetings and decide where the money goes or what isn't worthy of any more money.

My heart goes out to anyone who has suffered and also glad to hear of children that are growing up well after such a struggle at the beginning of life.

I hope I never have to be in that position. Will give my DD and extra squeeze today.

Kittya - holly was the one whose parents had four kids already I think.

Holly was the first baby shown, whose parents knew she was coming prematurely as her waters had broken. Mum had a C-section.

The other little baby, one of triplets, was called Simone I think. Her parents were the young ones with lots of other children.

I don't mean to gate-crash but I just wanted to say I didn't even watch the programme, only the first page of this thread and I am in floods!! Real deep loud sobs!!

To all those who have lost babies at this gestation (or indeed any gestation!) - words just do not suffice. Saying I'm sorry just feels so inadequate, but I really truly am. :(

I'm glad I didn't watch this programme. My 8mth old ds was very nearly a 23/24 weeker!! Terrifying times, thankfully we somehow held on until 36wks! He's napping just now :)

My contribution to the discussion: if the baby is born with any signs of life at all, I believe all should be done to sustain that precious life!!! If it isn't, I believe the doctors should try everything in their power to give that tiny little person a chance.
The suffering they initially go through is their fight for life. As a mother I could not deny them a chance to live.

Love and hope to all of you
xxXxx

Holly was the first baby shown, and she died in her mothers arms.

Simone was the survivng triplet.

not watched it yet but will do at the weekend with some chocolate and a box of tissues

I don't think I can watch it after reading this thread - I've got tears in my eyes already!

DS was born at 32 weeks and thankfully was/is fine thanks to the doctors in the NICU.

The thought of going through it any earlier than that is absolutely terrifying and my heart really does go out to any parents who have to cope with something so sad.

Like someone said earlier, I think a lot of us are counting our blessings today. It's a side of pregnancy & childbirth that is often kept very private.

I've just watched the first 12 minutes on iplayer. I wouldnt recommend anybody watching it.

I am hysterical. I am sobbing. It is indescribably heartbeaking. And that is an understatement. You'll need more than a box of tissues and chocolates to get you through that programme.

Who cares if it costs the NHS £10m a year. They're babies. They're precious. They're people. They deserve it.

Oh Yes Holly was the first and Simone, the second. I stand corrected, sorry.

I think that these types of decisions ultimately need to be made by someone who is not emotionally involved. Because as parents it is simply not possible to remain detached in order to potentially make the right decision for your child iyswim.

For a parent it goes against all instincts to allow our children to die - we strive to bring them into the world and to sustain their lives, so it is only natural that we would fight in order that they not die.

I didn't see this, but heard the discussion on Jeremy Vine yesterday.

It's heartbreaking.

The thing that keeps screaming at me when I hear the cost arguement is why on earth these babies are deemend (by some) to not warrant the expense, and yet smokers, obese and drug addicts are treated without question? Surely if anyone should have treatment withdrawn it is the people that have made the choice to abuse their bodies. These babies have no choice.

Going to watch this on iplayer now...

I missed the first half hour of this so will have to watch it on iplayer. Was very painful to watch as my first son was born at 24 plus weeks and only lived for 10 hours.It was without doubt the most horendous time on our lives.We would have done ANYTHING at the time to let our baby live(if I could have given my life for his I would have done it in a second). Now looking back I am more conflicted-he had a serious brain bleed and severe sepsis so would have probably had a quite severe disbility. Could we have coped with that/ Would his quality of life have been worth it?.These are hard enpugh questions without factoring cost into it. Horrible though it is I think in the end I have to agree with the docters that 23 weeks is the absolute limit for trying to save babies.I think the fact that so few survive is natures way of telling us thst we have reached the biological limit of what medicl intervention can do.
I am please to hear of the happy stories on here of 23 weekers bu we have to remember these are the exceptions and not the rule.

Jesus. Could you imagine giving birth at 23 weeks, your baby alive, and watching the doctors doing nothing? That must be one of if not the most horrific, heart-wrenching, helpless feeling in the world.

I haven't watched the program, I can't do it. But the thought that if any of my babies were in that situation, begging the doctors to try and save them, that's enough to bring me to tears.

I don't know how anyone can comment in a blanket way about 23 week old babies and whether they should be 'allowed' to survive, surely it depends on the prognosis in each individual case? Should be a joint decision for doctors and parents, it's not for anyone else to judge, especially not the bean counters. £10m is nothing in terms of the overall NHS budget.

Very well said constantlywrong!!!