We watched a program I think was on BBC2 last night at 9pm about the story about two very premature babies.

I was deeply moved by it as it was so very shocking,moving and also disturbing.

I am still in two minds about how babies at such a age can be kept alive and then grow up sometimes as one of the babies with quite severe handicaps. I know this is a very emotive subject but I was so moved by what I saw last night I have been thinking about it all day.

The one couple already had a severely handicapped boy and were told the likelyhood of it happening again was high. They went ahead and she had to deliver the second again at 23 weeks I think ? The baby did survive but still had problems.

I think what I am tring to say is that I do not think I could ever cope with a child with severe handicaps. I will hold my hands up and I have the utmost respect for anybody that has or is in that situation.

Lucy
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( I don't mean to upset anybody by this but as I said I have been so moved by what I watched last night that needed to share some thoughts)

Edge of Life...I couldn't watch it - I was in bits 5 minutes into it :(

I was one of the most difficult programs I have watched in along time . It has really affected me and upset me. I made myself watch it. I thought as you no, give up but it was something I was wanting to confront and watch.

Lucy
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I don't understand if they knew the risks were high for the second or any other children they had would be handicaped, why have more?... Life is hard enough to purposely bring a handicaped child into this world, to me that is cruel and self fish.....

That is my own personal opinion :( Sorry if I stepped on any one's toes :(

That is sort of where I was sort of thinking ...... but

there must be a further drive to this.

Sorry again as I am thinking aloud. If you really want kids,maybe the choice outways the risks.

I can never have anymore babies :(  but feel if I was given the chance I  know Mike my husband and I would never go for the maybe option if there was a choice of handicap. We both feel very strongly that we could not cope with a child with handicaps. I will go on to say I would have considered termination if anything had come up.

We are so very lucky we have a beautiful healthy 16 month old baby daughter.

Again sorry as I know it must offend people

Lucy
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Hi

I saw it too and I must admit it was one of the most heart wrenching programmes I have ever watched too.

Oddly I spoke to my cousin's wife today and she had seen it too. Their eldest and only daughter was born 9 years ago and was 28 weeks, she has a hole in the heart and is prone to fits/seizures which terified everyone. She has poor eyesight and wears glasses really thick lens, and has a hearing aid being deaf in one ear, and had to have her baby teeth removed as they were rotten due to steriods. She is small for her age she has twin brothers who are 3 years younger and they were the same size as her when they were 3 and she was 6 now they are bigger. My cousin's wife said she would not risk having another child who would be so much at risk, but their daughter's early entrance was a one off the Doctors said. I remember the worry the family went through and the fact 3 babies died when she was in prem unit. Very scary and the people last night must be very brave to go through it again knowing what was to come.
Karen   

Karen

I sobbed non stop through out the whole program. It was so distressing to see. I can't get over the birth they filmed. Mike my husband said it must be so like when people have to go through miscarriage  as they babies were so tiny and most must be stiil born.

Lucy
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I'm afraid I was too much of a sissy to watch, because I know how upset I'd be. At one stage I would have moved heaven and earth to have another baby, but at the same time I would have hated to inflict a limited existence onto a child. A terrible conundrum.

I can't watch things like this, it breaks my heart :(

I can't have any more children but I'm fortunate enough to have 4 very healthy kids. When I was pregnant with my youngest daughter, I had pre-eclampsia. I was advised by my doctor and midwife not to have any more babies because of the risks involved. I have to honestly say, if I'd of fallen pregnant again, I would of had that pregnancy terminated. :(

I too watched this programme, and I was completely transfixed.

We had our first baby after 8 yrs, without intervention, having been told that we probably wouldn't have one naturally. I then got pregnant again and had a "miscarriage", I termed it "stillbirth" at 20 weeks. If my baby had been another 4 or 5 weeks older I was told that something could have been done to save him. I still stand by my decision that even if my baby had been older I would not have requested any life saving intervention. In my mind, it's quite simple, if the baby is not mature enough to survive naturally then I wouldn't want to have intervention to prolong the life of a potentially lifelong ill child. Hard though that may sound, that is my soul belief. I thanked god for one healthy child, albeit she was touch and go at 42 weeks, I didn't want to cause unnecessary suffering to another. And I know that I couldn't have coped, especially with the view that my other child would have had to go without, so that I focused all my energy on the very needy baby.

It is a personal choice and my heart bleeds for anyone that has to go through this heartwrenching time

There was a similar series of programmes on a month or so ago. The statistics are frightening - the percentage of children (born before 24 weeks) achieving a near, normal life was very low :( I have been very fortunate to have had two, normal babies, without complication. I don't think that I could have coped with problems such as these. My daughter's schoolfriend who lives in our road, had a twin brother who had severe handicaps from birth - he died at 13. The family had a terrible life as the father had had a horrific accident and is a paraplegic :( :(

I am just so lucky - but it makes me feel quite guilty when thinking about families that have such problems :(

Daisy

Don't feel guilty, Lucy. I know exactly what you mean, but guilt is negative. Turn that feeling into something positive. Sympathise, but above all be thankful.

I didn't see the programme, but I have worked with people who have had miscarriages etc, or have suffered bereavement of a severly handicapped child.

My first thought are how brave these people are to lay their emotional out to such a battering. Some might say it is a selfish decision but who can tell what you would think or feel put into such a position.

I would have to reserve judgement on this one. Whilst I would probably say no to medical intervention, I think the individuals who try so desperately to save their children and give them some kind of life, need support and understanding.

I didn't watch the programme but these babies are not always handicapped or have health problems.

My son was born over 17 years ago at 26 weeks and only 2 pounds at birth. He only had a slight chance at survival but he fought and after 6 operations (1 was heart surgery and 1 was a colostomy op which was reversed after 6mths) and spending the first 4 and half mths of his life in SCBU he is now a fit and healthy teenager at college. He has no health problems at all , got 5 GSCE and is doing well at college. He was born naturally, no idea why 3mths early.

I understand your point though as my sister is a neonatal nurse on a Special care ward and she tells me about some of the babies that are born prem and it can be very upsetting.

It's difficult to know where the cut off point is.  Our daughter was born at 31 weeks, she was ventillated for 4 weeks as her lungs were too immature to cope on their own, she had lots of problems even a bleed in her brain, we were told IF she survived then she would have learning difficulties.  Well she's now 11, top sets for all her subjects and NO side effects of her problems at birth.  You wouldn't even know she was prem.

The Panorama program on a while back, Prof. Neil Marlow was the doctor that cared for our daughter, in my eyes he is a miracle worker!  But it must be difficult knowing where to draw the line

Like your self Cathh5,My son was 3 months prem.2 pounds and 10 ounces,He is now 22years old and has no medical problems at all.He is 6 foot tall.We have no idea why he was prem.We were very lucky with him as i remember other babies in special care with lots of health problems,Very sad.

I didn't see the programme but just wanted to add some of the smaller babies are tougher than we think.  I work on a neonatal unit and I must admit it can be very emotional but also very rewarding.  The parents of these babies quite often bring them in when they are older or send pictures and that is great to see. 

Michelle

I didn't watch this programme because I knew I would find it too upsetting, although I do really think programmes like this should be watched.  I have so far had four miscarriages between 12 and 18 weeks.  One was a 'missed miscarriage' which was only discovered when I had a normal scan and I had to take an 'early abortion' tablet so it would be rejected (I refused to go into hospital for any of these).  I fully believe that there has been some reason why these babies died and that it must have been for the best although nothing has ever been found wrong with my partner or myself.  I think you have to be honest with yourself and I am positive that we could never cope with a badly handicapped child.  I also do not want to have a child in any way other than completely naturally which probably means we will never be parents.  If any of the babies had 'lived' for longer and been born alive I would not have wanted any intervention to keep them alive if they were not going to survive naturally.
This is however a purely personal choice and I do believe that people have the right to think differently.  It is very hard to desperately want a child but I still could not have gone through what you have described the people in the programme going through but I can't help wondering whether it is best for the child.
Best wishes

As a midwife who trained in 1965!!! I was intitially amazed and unsure about the wisdom of the efforts made nowadays to save the lives of extremely premature babies.
However, last year my daughter-in-law ran into difficulties - premature rupture of membranes - at 22 weeks - baby still alive - and I was horrified by the consultant's initial advice to terminate the pregnancy. It was the thought of the baby being born alive but dying because of its prematurity. In the event, my daughter-in-law very bravely decided to let nature take its course, and little Alyssa was eventually born naturally at 23 weeks and 4 days, pink and in good condition. She was taken to special care and sadly lost her battle for life after 2 1/2 days. However, I'm so glad she at least had a chance, and I shall forever be grateful to my daughter-in-law for her courageous decision.

Treacle - just to say I admire and fully support your thinking that there must be a reason why things have worked out as they have. Like you I also have doubts about medical intervention both in terms of achieving pregnancy and keeping alive babies who would not otherwise survive.
I hope that things eventually turn around for you and that you have the family you desire.  But if it's not meant to be, try not to dwell on the negative, just appreciate all the good things you've been blessed with. My husband and I are childless but we have just celebrated 30 very happy years together. We thought our future would be empty and meaningless without children. In reality it has been anything but.

Best wishes.

How kind of you to take the time to write that Joyce.  We have always said that we are incredibly lucky to have found each other when we were really young and if we have children - great, if not, we have each other (and our wonderful dog of course).  I sometimes wonder what would happen if something happens to one of us and how the other would cope - maybe having a child would make that a little easier but I really just don't know.  We do have a great life and a lot to be thankful for.  Many congratulations on your thirty years together - we make 19 next July and I really wouldn't change very much of any of those.
Best wishes
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