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23 Week Babies - anyone watching?

257 replies

deemented · 09/03/2011 20:59

About to start on bbc2 now.

My boys were prem and my friend has a 23 weeker.

Tissues at the ready.

OP posts:
shmoz · 09/03/2011 21:58

yay Matilda!

YourCallIsImportant · 09/03/2011 21:59

That was a quick hour!

Emmanana · 09/03/2011 22:00

I'll be counting my blessings as I go to sleep tonight.

deemented · 09/03/2011 22:00

Geepers, DS2 is six and only really lost the prem look about a year and a half ago.

OP posts:
MollieO · 09/03/2011 22:03

The biggest eye opener for me was the lack of expenditure on community care. Ds was prem and needed a lot of support once he left hospital (not very prem at 33 wks but was very poorly). We never had to wait more than two or three weeks to see consultants etc.

ronshar · 09/03/2011 22:05

Sorry deemented, that is the point I was trying to make. For the doctors it is all about the babies compatability with life and the eventual quality of life.
For the parents is is all about the life of their precious baby.

There should be an in between advocate who can help both sides to come to decisions that are best for the baby.

jellybeans · 09/03/2011 22:07

I went into labour at almost 21 weeks and sadly they wouldn't/couldn't help her, it was a terrible feeling being just a couple of weeks away from any hope. My baby was alive but sadly didn't survive the birth. I also lost a baby at almost 24 weeks but she had a serious genetic problem.

I understand the basic arguments but if it was their baby would they feel the way they say? Alot of things in life you think you will do, change when you ACTUALLY are in the position you never thought deep down you would be in.

rathlin · 09/03/2011 22:08

Only watched the first few minutes and started crying so switched to Masterchef - glad Matilda made it:) Our precious DD died 3 yrs ago (yesterday) and although she was 29 weeks when born, she was the size of a 23/24 weeker - 1lb 4oz.

ariane5 · 09/03/2011 22:09

I just cant believe there can even be a question mark over whether these babies should be helped or not.The fact that it comes down to funding in most of the arguments for/against is so sad, there should not be a price on life or an age limit.

Yes, it may be rare for a 23 week baby to survive but that doesnt mean they should be denied the chance. If it became the case that limits were put in place where do we then draw the line? does it then call in to question everything else? will babies be deemed too early to survive? will old people who are unwell be seen as a waste of money to treat as they are nearing the last part of their life anyway??

The issue that really struck me after watching this was the clear need for better aftercare during childhood and into adult life especially after what heather said about the support drying up once she reached 18.

MollieO · 09/03/2011 22:09

I found the consultants were very clear in what treatment they would offer and where the cut off point would be.

midori1999 · 09/03/2011 22:10

One persons' idea of quality of life is not another though. My youngest DS has Downs Syndrome. I know if I had found out when pregnant, doctors would have strongly counselled me to terminate, but my son has a wonjderful quality of life and he is amazing.

Just because the majority of prem babies will have a disability (that 'disability' can be as simple as needing to wear glasses BTW) it doesn't mean they won't have any quality of life.

For is it was very clear that if our duaghters were born in good condition and making an effort to breathe, we wanted intervention. Not at any cost, but if the babies met certain requirements and therefore had a chance, they would be helped. In the same situation (I am 23+1 today) I would do exactly the same again.

It might not seem worth it to some people, but the nine days I got with at least one of my daughters is worth more to me I can put into words.

MollieO · 09/03/2011 22:11

Sorry, that point was in reference to care/treatment offered to my Ds.

jellybeans · 09/03/2011 22:12

What about in cases where the due date is unclear? What about if the baby is a few hours away from 24 weeks? What if the mother has had no antenatal care (so no idea how far she is)or has a baby small for dates who is actually much further gestation? It isn't as clear cut really as having a cut off date.

littlebillie · 09/03/2011 22:18

Geepers what a beautiful blog. They are gorgeous!!!
My twins went full term and I know hard that was just the day to day care, but with premmies you must have been a superstar!

ariane5 · 09/03/2011 22:20

all 3 of my dcs were ft.BUT all 3 have a disability (a genetic condition) which requires a lot of appts, physio treatment etc. Nobody has ever questioned their quality of life or what they cost the nhs, so it seems unfair that some doctors raise the subject of money 'being better spent elsewhere within the nhs'.

Yes, my dcs quality of life is by no means wonderful but had any of them been born prem would i have been subjected to this view? I think the point im trying to get across is that premature babies matter just as much as ft babies and everybody else and i cant for the life of me see how anybody could ever think otherwise

Portofino · 09/03/2011 22:23

ariane, you say there should not be a price on life, but there is! Not just babies. There are life preserving cancer drugs out there that the current NHS cannot afford.

Sadly the cost of medical progress is harder and harder choices on who to treat, who to save, who to support. Medical technology has moved on in leaps and bounds, yet we all want to pay less tax and expect endless treatment for free. It is not sustainable.

Yet on the other hand NOONE should die when there is treatment available. What do we do?

deemented · 09/03/2011 22:27

Increase revenue on cigarettes and alcohol and plough it back into the NHS.

But they won't.... because that would make sense...

OP posts:
ronshar · 09/03/2011 22:29

If you had to go in to hospital for an operation and the doctor told you that in the last 6 months only one person had survived this op, would you still have the op?

If you had to make the choice between spending £100,000 on a 23 week prem or £100,000 on 10 operations to restore hearing in deaf children(for example I have no idea if that is even possible)
Which would you choose?
That is what our NHS trusts have to do every day.
It isnt a big pot of unlimited cash and hard choices have to be made. The best possible outcome for the most amount of people will always be winner!

That isnt to say I agree with it because I dont. It is reality.

It sucks.

ariane5 · 09/03/2011 22:30

portofino-dont get me started, premature babies, cancer drug postcode lotteries, dnr labels on old peoples notes its all unfair and wrong and i wish i had the answer but sadly nobody does and its frustrating to say the least.

It just saddens me that there is a price on life when the government wastes money on things that quite frankly are not necessary and that money could be better spent elsewhere-ie the nhs.

midori1999 · 09/03/2011 22:57

"If you had to go in to hospital for an operation and the doctor told you that in the last 6 months only one person had survived this op, would you still have the op?"

I think that would really depend on how many people had actually had the op and what the alternative for me (eg. death) was, dont you?

They didn't mention how many 23 weekers had actually been admitted to the NICU in that 6 months. I know in the unit where my daughter was only approx. 2 23 weekers per year even survive long enough to get into the NICU and out of those 1 will live.

Sidge · 09/03/2011 23:49

Just watched this on iPlayer. What an interesting programme.

I have to be brutally honest and say I can see where the doctors are coming from. But of course as a parent your priorities are completely different to those of the medics and financial decision makers. They don't have a vested emotional interest.

Just because we can do something, does it mean that we should? Just because we have the medical knowledge and technology does it mean we have to use it?

But then you can't put the genie back in the bottle. How hard it would be to say "we can resuscitate your 23 weeker and keep her alive but we're not sure if we should".

Such difficult decisions.

MelinaM · 10/03/2011 00:47

A very interesting programme indeed. 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. You wouldn't put a dog through what those babies had to endure.
I also agree that the interests of the child should be first and foremost, not those of the parent. The ultimate decision should rest with the doctors.
We found the mum of Holly to be quite selfish - wanting her to be kept alive at whatever cost. Whereas Matilda's parents were the polar opposite.

MichaelaS · 10/03/2011 01:00

Wow, i taped this and have just watched it back. My son was born at 24+1 in very bad condition, with bad for dates lungs and with a total body infection (sepsis). He needed (and got!) aggressive treatment including a special type of ventilator (oscillator) and nitric oxide to assist his gas transfer. That was despite the fact that noone thought he would survive.

He looked very like the babies in the program, it brought a lot back.

Well, we were very blessed and Nathan pulled through. 150 days as an inpatient and he came home on oxygen. He suffered two severe brain bleeds within his ventricles in his early life, but he shows little delay now he is 18 months corrected - although we have had physio, SALT, and still see a lot of consultants at the hospital. He would be counted as a medical miracle - and under rules about who to resuscitate he would have failed any test going because he initially seemed so weak.

I think we can all agree with 2 of the 3 conclusions of the program - that we should be doing more to prevent premature labour in the first place, and that we should be prepared to support the babies we do save for their entire lives. Care should not stop at 18, and we should not make any disabled person feel they are not wanted by society or are not worth supporting.

Whether we resuscitate 23 weekers on an outcome benefit / short term suffering / cost decision is tricky.... but we should be careful of the statistics. Bliss say the cost of resuscitating the 450 babies born in the uk every year is 0.009% of the NHS budget - a drop in the ocean. Many 23 weekers do not survive the birth or get as far as the NICU. Although this is very tragic, it means there is very little cost in attempting to save these babies - probably the worst we can say is that the mum and dad are not able to spent time with their baby in the last few minutes of life as the doctors are trying to save their lives. I know I would certainly give up the chance to hold my dying child for a 10% chance that they might live.

In some european countries the survival rates are much better because every 23 week birth is attended by a senior obstetrician and a senior neonatologist. This is internet rumour, but I heard a survival rate of 35% at 23 weeks, which rises to 65% of those babies that get to the NICU alive. That is a completely different outcome to the 9% quoted in the program. Even in the UK, the EPICure study implies a higher survival rate, although it may be that only the "stronger" babies were resuscitated in the first place.

Also, what do we mean by a disability for the 8 of 9 children who survive but are disabled? Well, as someone else said, being disabled includes needing to wear glasses! It may mean being partially deaf, or having minor coordination problems which prevent the child from hopping or riding a bike but where the child is able to walk, get dressed, and live a more or less normal life. We need to be careful not to lump all these children into the more difficult life Heather faces.

And if the objective is to prevent serious disability in 23 weekers, surely this would also mean we should force abortions for all children identified pre birth as suffering a serious disability (genetic problems - e.g. downs syndrome or growth abnormalities - e.g. lack of kidney formation). When you think about it, this is completely unacceptable to society, and infact noone is saying we should withdraw or never offer treatment to prevent all risk of disability at the cost of preventing all hope of a healthy life.

Its all so emotive, and noone is saying we should outright stop resuscitating 23 weekers - just that we should think about it and not allow this to be a taboo subject.

Put it another way - should we resuscitate a 20 weeker who has no hope of living? If not - where do you draw the line? At any hope of living? at a significant hope of living? a significant hope of escaping severe disability? Only if the disability can be moderated and improved by the lifelong care we are prepared to offer?

And once we have drawn that moral line, we can start discussing the relitive costs compared to other NHS services and whether the funding also makes sense.

My heart goes out to all the parents in the program, and to the medical staff who do this day in and day out to give our few miracles the chance to survive.

MichaelaS · 10/03/2011 01:02

450 babies born every year AT 23 WEEKS is 0.009%! there are more than 450 babies born in the uk every week. doh!

Geepers · 10/03/2011 05:56

MelinaM, do you think my babies should have been left to die? Born at 23 weeks they of course had a rough start - ventilation for 7 weeks, cpap for another 6 weeks, feeding tubes for 16 weeks, numerous (probably daily) canulas being placed for weeks.....but that was a very short space of time in their lives. After 116/117 days they came home leading normal lives, and are to all intents and purposes 'normal' children now.

For what it's worth, of the 23 weekers who made it to NICU while we were in intensive care, 100% of them went home.

My husband and I told the drs we didn't want to prolong suffering in our babies and would always do what they recommended, ie we didn't want our twins kept alive 'at all costs'. But we are now 13 months down the line with happy, smiley babies. The trouble is you can't pick and choose at birth those 23 weekers who will do well. Is it fair to just let them all die when potentially they will lead normal lives?