Wednesday 30 March 2011

The Price of Life - Making Sense of it All

I finally watched the BBC2 documentary The Price of Life , being abroad at the time of broadcast, I was unable to watch it until now.

I was suprised that I wasn't shocked or even angered by some of the statements. I've heard a lot of sentiment before, particularly some of the more shocking statements by NHS commissioners questionning the "value" of resuscitating 23 weekers.The amount of money it costs to keep a baby in NICU is staggering. There are no two ways about it. It's expensive. There is a lot of need in the NHS, and a lot of people who need support, help and medical innovation. Medicine is expensive. I think the questions raised in this documentary are valid and do need to be asked, discussed and thrashed out.

What I was touched by in this documentary was the delicate positioning of the stories of these special babies, against the backdrop of the financial arguments as to whether this is good use of NHS money. I found the points raised were thought provoking, and interesting, if at times, very alarming.

I feel that the documentary raised a lot more questions that it answered, which is a healthy thing. Surely the biggest quandry was that one of the babies featured, Matilda, had a relatively smooth course through NICU, and was discharged home with her family. Adam Wishart was saying "no one is questionning whether Matilda should have been saved", yet of course, that is the very question. Some 23 weekers will be healthy, happy children. Not all, not even most, but if we routinely, as they do in Holland, allow these babies to die, are we robbing potentially healthy babies of a long and happy life. Do we, as a community, say "well we've prevented x number of babies growing up with disabilities?" and are happy that we've allowed a certain number of potentially healthy babies to just slip away? Do we overlook the people that do have disabilities that live full, happy, and productive lives? I was very concerned that this documentary did not prevent a balanced viewpoint of life with a disability.

What I'd like to do over the coming days is look at the three points the documentary maker made at the conclusion of the programme.

1. More money needs to be invested in addressing the rate of premature births in the UK and aiming towards reducing this number. In particular the documentary touched on the fact that poverty is believed to be a big factor, and I am interested in learning more about the relationship between poverty and premature birth.

2. Balance in decision making needs to be shifted back to doctors and away from parents.

3. Lifelong support needs to be given to those premature babies who are disabled as a result of their early birth.

I am very grateful that the BBC has screened this documentary, and helped to raise the awareness of these precious babies born at the edge of life, and I do hope it promotes debate, and some resolution in terms of NHS policy and procedure, and brings better consistency in decision making.

Tuesday 15 March 2011

The way forward

Whilst I have been away, I haven't blogged. Well I've one two little entries, and initially I thought I'd try and schedule posts and keep up with it, I decided that whilst I spent time with my parents and my little boy, Í'd give it a rest, only blogging if the mood really took me.

I've had a lot of fun on holiday, and a bit of time to reflect on what happens when we get home in just under 2 weeks time, both with the blog, and with life in general.

When I started this blog, it was just for me. It was cathartic to write things down. If I had got 20 followers I would have been extremely happy. But now, with Twitter and Facebook I am reaching a lot bigger audience than I ever expected. I am so thrilled and priveleged to have met so many wonderful people through the blog, and I am so happy that I have been able to share with, and to help other people.

What has suprised me is that it is the premature baby posts that get the most views, and other things that I thought people might be interested in, haven't really taken off the way I thought they might. So this blog has become a niche blog, in a sense.

I am attending Cybermummy this year, to learn more about blogging, and to explore where I can take this, and what I do with it. But I am becoming increasingly aware that I don't really "fit in" with other mummy bloggers, with product reviews and general chit chat. I think that says a lot about the way I write, I am better when I am exploring issues and emotions than sharing the general comings and goings of our lives.

I guess the reason for this post is to get some feedback. What do you, my reader and follower, want from Not Even A Bag of Sugar? What sort of things would you like me to cover? Would you like to see more personal things, and off topic posts, or should I just stick to the small stuff?

The other thing I would really like to do is introduce Twitter chats monthly. I have taken part in several March of Dimes #preemiechat sessions, and would love to see us English and European mums have our own chats too, as things are so different on the other side of that big pond!

The other thing that has been on my mind ever since Joseph's suprise arrival is writing a book. I know that there are many great books out there, but I haven't seen any English ones, and I think there is a need. Is there a need? Did you wish there was a "What to Expect" book about your premature babies first years? And how to take care of them at home? Something practical and encouraging?

Please take some time to think about these three things -

What do you want from Not Even a Bag of Sugar?
Would you appreciate and above all participate in a #notevena Twitter chat once a month?
Would you have bought or read a book on caring for your premature baby had one been available?

Wednesday 9 March 2011

The Edge of Life and The Edge of Reason

Tonight in the UK the BBC are broadcasting a programme by Adam Wishart arguing the ethics of resuscitating and caring for babies born at 23 weeks. I am unable to watch as am currently in Australia on holiday, and BBC programmes are unavailable on the iPlayer here, so will have to wait until my return.

I feel a strong bond with this programme, as a dear lady I met through a mutual acquaintance is featured on this programme. From my understanding, the programme is looking primarily at cost, and whether it is "worth" investing in premature babies born at the very edge of viability, at 23 weeks.

Before I had Joseph I didn't really understand the term 'viability'. It wasn't until after I started my journey as mother of a premature baby that I encountered the start reality that in some areas of the UK babies are given support at 23 weeks, and others are left to die. It is the same in Australia, seemingly.

I have awful issues with the whole "dating of pregnancy", its not an exact science, unless the baby is the product of IVF etc we don't know the baby's exact date of conception and therefore we don't know, in weeks, exactly how old that baby is. Whilst we do have dating scans, and these are done at 12 weeks and again an anomaly scan at 20 weeks, its still not exact.

There was so much confusion with dating my pregnancy. Then at my emergency scan his head showed he was 27 weeks, but his leg and stomach measurement said 24. But once he was born, questions were asked by the unit staff as to whether my dates were correct, as Joseph seemed too strong and too well for a 27 weeker. However, if he had been older, then his weight would have been even more of an issue, as Joseph weighed what a 23 or 24 weeker typically weighs. I am fairly confident my dates were correct, but I am still unclear. Joseph had the steroids through me before birth, and had surfectant, so I think its the medical intervention that made a difference to Joseph, not that his dates were incorrect.

There's too much doubt with dating for me to be comfortable for decisions to be made on a number alone. And these decisions are typically made before delivery, before the doctors know how strong or how well a baby will be.

I feel strongly that decisions need to be made by parents, with good clear information from doctors, not by governments.

I feel also that in this culture of scans, amnioscentisis, genetic counselling and other various tests, we have, as a community, become disability averse. We see disability as a curse, as something to be feared, to be wiped out. As another expense society has to bear. But there are so many people, famous or not so, who enrich lives, are productive, and are important members of our community. I feel it is wrong to "breed out" disability. I do feel that the testing available has saved a lot of heartache and sorrow, as there are conditions where prognosis is poor, or just not possible, and I am not saying that anyone who has made the heartbreaking decision to end a pregnancy based on disability is wrong, as it is not my decision to make. I am grateful that we have options and choices, however, I do feel that my life has been enriched by the people I have met with disabilities, and my husband has a disability which is now routinely screened for and babies are terminated with this condition.

I am sure this documentary will raise more question than it answers, as I don't feel there is an answer. I do feel its a great shame that more funding isn't available into preventing prematurity. We need more research, more doctors able to do complex procedures and planning for those at risk, and better antenatal care. There are always improvements that can be made.

My heart goes out to all those who have had such early babies, who have had to make difficult decisions, who have seen their babies become angels.

I pray that as a community we can come together, and present some answers, and see that this debate is done with love, care and heart.