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.

Jellybeans Amillia Taylor was actually born at 23+6 weeks. The 21+6 was taken from conception (she was an IVF baby) and not the mother's LMP as most dates are taken. Still amazing she survived, given her gestation and her birth weight.

I find it very sad that people think we should just let our babies die, especially consideroing there are ladies on this thread who wouldn't have their darling children with them now had they done that. I wonder what they would do in the same situation if they were unlucky enough to face it? I was in the 'lucky' position of knowing I would deliver very prematurely if I even got to the 23/24 week mark as my waters went at 14+5, so I had a lot of time to research it what it was like/potential outcomes for babies born at that gestation. So, I was able to make an informed choice, although obviously emotions were involved too. I would have chosen not to have Megan resuscitated at birth, she was just far too sick, but my DH wasn't prepared for her to be trying to breathe and when he saw she was he asked for her to be helped. It wasn't really the time to argue.

One thing that really got me about last night's programme was Holly's poor Mum saying 'I'm Sorry' to her DH when they handed her her baby girl. One of the things I most vividly remember about my girls being born was saying sorry over and over again to my DH.

Geepers Not Matilda. She was born last year. I don't want to give away too much info as not my child iyswim? If you can tell me when your twins were in I can tell you if she was there. You probably know one of the nurses I know too. I'll say F and see if you know who I mean?

Can I suggest that anyone who is interested read this person's blog. It's very well written and it pretty well sums up my thoughts.

Johnworf - I agree

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

I had this injection (in my thigh) and it was not painful. If it was going to help my dtws (born at 29 weeks) it was no problem for me at all, and I'm not fond of injections.

They were in special care for 9 weeks. No problems, thank God, and they are 17 now.

Re steroid injections in mum pre-delivery - if you have to have them I found wiggling my toes helped. Not sure it does anything about the discomfort during the injection but it was a distraction.

Miranda - I had the steroid injection too; top of thigh and very painful for me. However I would have had it tens times over.

For anyone reading this because they have perhaps recently given birth to very premature babies I would like to share this with you:

In the past hour, inspired by this thread, I asked DD to lay on the floor, I picked her up by her ankles, swung her around the room, bounced her on to the chair and listened to her giggle.
When I told her that no, she could not do the same to me, she said that is because "you are big, I am small, you are heavier, I am lighter, I could not pick you up Mummy"

I have sat with her as she talked through, understood and wrote out words in a language not native her or I.

She read through her book sent home from school.

Also, when getting the bus home earlier, she told me the bus number as I

am blind as a bat checking she can read the numbers.

She was born at 24 weeks.

I was once told to be careful not to break her back and arms as I was changing her thumb sized nappy. Now I take pleasure in swinging her up and down.
I never thought she would be able to learn, read or write and yet she understands scientific concepts. She is learning to read. She can write. He has better eyesight than me some.

She can be very stubborn, however anecdotal I hear that many preemie children are because, I believe, they have already had to fight hard, and
stubbornly to cling on to life.

*the last sentence is totally garbled.

Premature babies, I believe, are strong and stubborn fighters.

what a beautiful post caramel.

I've just watched this and cried and cried some more. I tend to agree with the link johnworf posted. What value is life. Much to think over.

I am so sorry for all who have been through this.:(

Life is not always valuable. My mother suffered from cancer for a long time. At the end of her life she spent three months kept alive in hospital, in pain and unable to eat, in the hope of an operation that would keep her alive for another few months. I don't think the doctors were ever upfront with her about how little the operation and the expensive chemo they were trying to get permission to give her would do for her. I think the emphasis was on just keeping her alive for as long as possible, never mind the condition she was in, rather than being honest and giving her a fair chance to make her own decisions.

When she was dying, she spent a lot of time worrying about my sister, who has a genetic condition and an intellectual disability. My sister's quality of life as a child wasn't bad but as an adult it is awful. She is angry and miserable. I will have to look after her one day, fairly soon probably, and I am not looking forward to it. And if she outlives me, which is more than possible given our family history, I don't know what will happen to her. Based on this, I don't think it is kind to set babies up for a life of pain and difficulty. Of course, there are amazing success stories, and that is what makes it so difficult because parents live in hope.

And I am so sorry for everyone who has gone through this.

midori It was the "I'm sorry" which caused floods of tears in me too. I remember apologising for the early birth of our son. :(

libby70. so sorry for your baby son, that must have been horrific. x

i cannot tell you how many times i have said i'm sorry, it was my body that let the baby down.

I worked on NICU for 5 years and nursed many 23 weekers. I think if i'd gone into labour at that gestation i would have opted for TLC and not invasive treatment - but i say that as a nurse not a mother who has just delivered a precious child. Saying that i've seen many cases where docs wanted to withdraw care on babies, some born at 25 + weeks only for them to go home with very few problems several weeks later. Very very controversial and difficult area of medicine but it does seem that despite the huge advances in technology and treatment (i left NICU 10 years ago) the outcomes have not improved much

My DD has a genetic condition and various disabilities and she is e happiest person I have ever met, old or young.

She is not a worse child to have than one without disabilities,and it saddens me that people cant see children with disabilities as 'different' rather than 'worse' or 'undesirable'

We expected our DS to be born at around 22/23 weeks and decided that we wouldn't want him aggressively treated. It was an easy decision to come to as we knew he was going to be early and we had already had a premature baby so knew what NICU would entail for him and what his prognosis would be in the long term.

It would have been a lot more difficult to reach that decision if his birth had been a surprise and the only knowledge I had of tiny prems was miracle stories I the press.

I'm currently 20wks with #4 and DH and I had the discussion last night. We both agreed that treating aggressively would not be what either of us wanted if anything should happen in a few weeks. I appreciate that my opinion might change if it happened to me but as WorzselMummage just said, there's a lot in the media about the miracles but not a lot about the many many more who don't make it. My sister is a Paed & Neonatal anaesthetist consultant and whilst the conversation only happened last night, it was just confirming what I've thought for a long time, mainly due to previous conversations with her.

Having said that, I do appreciate that many of you had babies who were aggressively treated and who now are amazing children. I can't judge you for that in the same way that I don't expect to be judged for my choices.

That's why it's such an emotive issue. And that's before you even put the financial aspect into it

My first baby was stillborn at 30 weeks. One comment made to me afterwards (which was meant kindly) was that perhaps it was better he died as had he survived he might have been disabled.
At that time I remember thinking I would rather have a disabled baby than a dead one.
Parents in this situation need to know that everything that possibly can be done to help thier baby survive will be done whatever the outcome, otherwise inevitably you end up blaming yourself.

I'm sorry you lost your ds Tilly. My biggest fear is losing a baby so late. It happened to my next door neighbours brother & sil a couple of months ago and I cried and cried for them as she had got all the way to term - nothing 'wrong' she 'just' died.

I think part of the emotional aspect of this problem is that whatever you do you blame yourself. Guilt is part of the maternal package, it's just that most of us worry about much lesser things like how much sugar our kids are eating or whether we are a good enough parent. Thankfully most of us have no real idea of what it means to blame yourself for the death of a baby.

That's why usually I stay away from threads such as this one. I cannot begin to imagine how it feels and as such, anything I say must sound horribly unfeeling. I don't, and most sincerely hope I will never have cause to, truly empathise with your (or anyone's) loss.

'We both agreed that treating aggressively would not be what either of us wanted if anything should happen in a few weeks. I appreciate that my opinion might change if it happened to me'

I have found through experience of losing 2 babies between 20-24 weeks that your opinion really does/can change when in the position. While there is ANY hope at all of survival you will probably be desperate for it unless there is extreme evidence that the baby will definately be severely brain damaged but you cannot tell that early usually anyway. While me/DH knew there was a chance all would be OK we assumed that it would be even when the odds were stacked right against us and the chance of survival was teeny. Until we were told there was no hope, we didn't really acknowledge that we were going to lose our babys as we clung to hope and the general feeling that things would be OK.

I cannot imagine having to go through anything as horrendous as loosing a child at any age, be it 23 weeks gestation or 23 years old.
I do think some of the issues are vaguely comparable though, as is horrifically possible for anyone to suffer an accident that gives them terrible odds of survival in the same way that a very prem baby has.

I'm not sure that survival with disability is the clincher for me, it's more what the chances of HEALTHY survival is (perfectly possible to be both disabled and healthy IFYSWIM).
I don't feel cos-based arguments are helpful; after all if we followed that then really there would be no NHS.... so many conditions cost buttons to treat but children die of them every day, jsut becuase they are born in developing countries. What makes their lives worth less?

My DS was born at 28 weeks some years ago, Hehad a stormy neonatal period 100 days in SCBU. I walked in on the doctor doing a ultrasound brain scan and when DS was 10 days old and saw the look of horror on her face. In the quiet room afterwards we were told he would be quadriplegic, have learning difficulties and sensory deficits.I asked whether he would know he was loved and DH asked whether DS would be able to have sex! The prognosis was true he is blind, tube fed, quadriplegic etc etc. He will be soon be an adult and I fear the reduction in services. Yes, it has put a tremendous strain on the family but we would not be without him he is a wonderful son, his Dads pride and joy and he is very happy and sociable. Seeing the programme brought it all back. The beeping monitors..the little ones who did not make it. I think the important thing is that the parents are given as full information as possible to make any decisions, the medical profession does tend to have a negative view on disability and quality of life.

johnworf thanks for the link to that blog, I also agree with almost everything that blog says.

The comments to the blog have a link to Adam Wishart's website explaining how he came to the conclusions he espoused in the program - link here:

www.adamwishart.info/2011/03/23weekbabies-the-price-of-life-the-evidence.html#tp

it's quite well written and there are lots of comments on the bottom too!