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.

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?

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.

Have Toddler will Travel

Hello dear readers, I am missing you all, and missing keeping up with my blog whilst I am overseas. I thought I'd tell you a bit about how we did on the plane to get here.

Joseph and I are travelling alone, my husband is still at work whilst we're away for six weeks, hopefully this will keep him out of trouble for a bit! We left on an evening flight from Manchester to Dubai. We then flew Dubai to Kuala Lumpur and finally on to Melbourne. It took a little over 24 hours.

I did a lot of research about what to pack in our hand luggage. I had a Trunki case for Joseph filled with toys, special blankie and his beloved Teddy. I had a carry on bag with our mei tai sling, snacks, and his sippy cup. On the plane they provided baby milk and bottles. Joseph doesn't use a bottle now usually but he loved his milk in a bottle for take off and landing, so I'm grateful that had these on board. I've bought a new cup with a sucky nozzle for the return leg.

We had a bassinette booked, the airline did say in the UK that the weight limit was 11 kg, however in practise the staff do not like babies anywhere near this weight in the bassinette, so it was pretty useless to have this booked, as I had to fight for it onboard, and Joseph preferred to sleep on me anyway. I haven't booked a seat for him, as this would have cost 75% of the adult fare, and they have to be on a lap for landing, take off and turbulence, and all our flights have taken the gravel road!

The sling has been an absolute life saver. Although a big boy now, Joseph doesn't stand or walk, so without this I am not sure how I would have managed the long queues through check in and immigration. It's also helped Joseph to feel more secure as he is nice and close, and can look all around whilst still feeling safe.

It's been an adventure so far and an enjoyable one. Not too many tantrums and tiaras, and Joseph has had great fun meeting new friends and getting to know his grandparents again. And because the flight was so good, I am not dreading the return trip!

Tales of the Unexpected

This is my guest post for Savvymum4Autism's SpecialSaturday, please visit her blog! 

When I first arrived from Australia to Manchester in 2002 I really struggled to settle into a job. After six months I decided to return to my original career of caring for adults with disabilities. After a little while, my agency told me work was drying up, and would I work with children. Children? I wasn’t really sure about it, but my manager reassured me that they were just adults in miniature and I’d be fine!

I had a number of children under my care, and one day I was asked to work with a little boy we’ll call Max. Max had gone through three agencies, in our agency I was carer number 7. He was described as challenging and difficult. I decided I’d give Max a go and take him as I found him.

Max was different. Full of life, very quirky, and not prepared to be sat in a corner, for Max, life was for living. He had no fear, and we had adventures! He loved to play games, to read books, to snuggle under a duvet and “talk” although Max had no real words at 7 years of age.

Everything was going fine until one day I was in the front room. There was screaming, tears and tantrums. I was terrified. 

Max’s dad came storming in, saying “what has Max done”, he ran in to find me in the corner in tears. Max had his arm around me patting my head. There were four birds of prey circling around my head (ok 4 cockateils sitting on the curtain rail). I do not do inside birds. At all. Ever. 

Max had immediately recognised my distress and stayed by my side comforting me until an adult could come and fix the problem. 

I wanted to share this story because, like many people, I had a perception that children with autism existed in a bubble, and didn’t really know how to react to emotions and to deal with others in distress. And whilst some children with autism are perhaps more like my stereotype, we need to be very careful with labelling and with our expectations. Each child is an individual, regardless of the label they may have been given.

What Having a Premature Baby has Taught Me

I've been trying to look at the brightside this week, with a bad consultant's visit with Joseph on Wednesday and the resurfacing of feelings of guilt that he was born early. I'm not wishing a premature baby on anyone but here are today's thoughts.

• I have a wonderful, huge community of mummy friends from all over the world. I never would have met such amazing mummies and babies had it not been for Joseph. 
• I've learnt that all mothers feel the same, mums of premature babies, of babies born with illness or defects, mums of normal term babies, we all feel overwhelmed and a deep sense of responisbility. And we're all rather scared.
• I have learnt patience. I have sat by an incubator watching a baby, who should have still been inside, learn to breathe on his own, learn to feed. I have watched a small boy eat peas with his tiny fingers. I've watched my small boy learn to crawl and to pull to stand. Each thing has taken so long, but he has got there.
• I have learnt to deal with doctors, with the public, with well meaning friends. I have learnt to advocate for my baby and for myself. I have learnt the "smile and nod". I might need to approach the NHS for chiropractic treatment on my neck for RSI from repetitive nodding, however.
• I've learnt to smile. Even when my heart was breaking, I learnt to smile, and to hope. I've learnt to laugh when things go right, and laugh when things go wrong.
• I've learnt to believe and to trust, even when all hope appeared to be gone. And I've learnt that prayers are answered. Not always the way we expect.
• I've learnt to laugh, at my little boy, at myself, and at life in general. Sometimes to laugh is the best thing to do. Sometimes its the only thing.
• I've learnt to cry. Deep sobs, at injustice, at grief. And not self indulgent crying. I've shed tears for babies and mothers I've never met. I've shed tears for doctors standing in corridors with head in hand wondering what to do next. I've cried like I never have before.
• I've learnt that life is deeply unfair. It's a fact, and its our responsiblity to form communities, to help those for whom life has been so deeply unfair.
• I've learnt that you can go to Toys R Us and spend the GDP of a small African country on toys, or you can find an empty plastic bottle and put some pasta in it, and give it to your child.
• I've learnt that a scarf can be used to wipe a nose, wrap a baby in, or play a thousand games of peek-a-boo.
• I've learned the kindness of strangers, and the judgement of strangers too. I've also learnt that the toddler years can't be too bad, as old ladies have no recollection that their toddlers were unholy terrors and its not just yours! Or they are so bad that the amnesia never goes away!
• I've learnt how to hide vegetables in almost anything! I've learnt that no matter how good you are with weaning, there will come a time when vegetables are perceived as offerings from the antichrist and all you can do is make them disappear.
• I've learnt that a small baby can produce an alarming amount of wee, poo and vomit. I've learnt to deal with cloth nappies, and with vomit sodden clothes. I've learnt cycles on my washing machine I never new existed.
• And ultimately I have learnt true love. It's a cliche, but I never understood love until I had my baby. I couldn't hold him, but I felt I was in my heart. When I looked at that tiny thing, my heart began to live outisde my body.

Going Home on Oxygen

 My good friend Kylie (and mother to Joseph's best male friend!) has agreed to share her story of coming home with her baby on oxygen. It is quite common for a premature baby to come home on oxygen, and whilst it appears daunting, it doesn't have to be a nightmare, as Kylie's story shows. 

From the moment that Llewellyn graduated to SCBU from NICU, I had an inkling that he was going to be coming home on oxygen. After the move, I watched as his oxygen requirements went up and up as he struggled to breathe on his back. 

To reduce the cot death risk, babies need to be slept on their backs, however, as the majority of the lungs are in a person’s back, babies with lung problems find it easier to breathe on their tummies. For this reason, they are cosseted a little while in NICU, being allowed to sleep on their tummies. Cot death isn’t as big an issue because the babies are hooked up to a large number of monitors. Once they are in SCBU though, the focus shifts to getting the baby ready to go home, and this includes getting them used to sleeping on their backs.

So, back to Llewellyn. We had been told that he may be coming home with us in three weeks. I also figured that if that were the case, it would take some kind of miracle for him to escape coming home on oxygen because of the levels that he currently needed. I immediately started worrying. We have stairs in our house – the bedrooms are upstairs and the living area downstairs. I was envisaging myself carrying my tiny baby under one arm and lugging an enormous oxygen cylinder (the ones they have in hospital) under my other arm, going up and down the stairs all day. I wasn’t looking forward to it.

I expressed my concern to one of the nurses in the hospital and she was brilliant. She reassured me that no, I wouldn’t be lugging a cylinder all over the place. We would instead have a grey box (a concentrator) the size of a dustbin installed in one of our rooms. Connected to it would be enough tubing to reach all over our house. The concentrator runs off mains power and it works to convert air into pure oxygen. The nurse then hunted down a copy of the Bliss publication, ‘Going Home on Oxygen’. I read it cover to cover and it answered a lot of my questions and reassured me a lot.

As it came closer to discharge, our nurses were very good at preparing us for dealing with home oxygen. They showed us how to change Llewellyn’s nasal cannula (the plastic tubing with prongs that is hooked up to the oxygen). As Llewellyn became more stable, they also encouraged us to take him for walks in the hospital grounds. They showed us how to disconnect him from the wall supply and to connect him into one of the hospital portable cylinders. While the hospital cylinders were different to what we would be using at home, it gave me the confidence in disconnecting him from one supply and connecting him to a portable system. It was also a fantastic experience – a chance to have my baby to myself!!!

Three days before discharge, the oxygen man came around to our house to inspect it to make sure that it was suitable for oxygen installation (apparently if you live above a fish and chip shop, it’s too dangerous to have home oxygen – at that point I was very thankful that we didn’t decide to live in the flat above the cafe that we were considering!). He then installed the oxygen equipment:

-          The concentrator and tubing

-          The extra large back up cylinder should the power supply fail

-          Three mini portable cylinders and a regulator

He showed Drew (I was at hospital with Llewellyn) how to turn on the converter, how to check the meters, how to connect it to Llewellyn and also how to use the portable cylinders for when we went out and about. He left us with a lot of information, including a list of people that we needed to inform about having oxygen in the house. These included:

-          Our insurance company

-          Our landlord so they could inform their insurance

-          The fire brigade (so you are a high priority in case of fire)

-          The electricity supply company (so you are a priority if the power goes out)

Finally, it was two days before Llewellyn’s discharge and we were rooming in at the hospital. It was a wonderful feeling- to be almost on our own with our baby. I spent most of the first day just staring at Llewellyn, sleeping in his cot. The day before discharge we ran through a checklist of everything we needed to go home:

...car seat...check

...going home outfit....check

....muslins to stuff around Llewellyn’s head in the car seat...check

...portable oxygen cylinder....no!

Cue hubby’s mad dash back home to collect the oxygen cylinder.

The next day Llewellyn was discharged mid-morning. We had specially hired a car to get him home so that Drew would have the pleasure of driving his son home from hospital. Once home, we excitedly turned on the concentrator and carefully hooked Llewellyn up to the machine. We were so pleased! That afternoon, after we had had a chance to settle in, our neonatal outreach nurse arrived to check that the oxygen was all hooked up and then we were on our own!

Going to sleep that night to the steady hum of the concentrator (picture a steady shhhhhh clunk sound) I was ecstatic. My baby was home at last!

Over the next few days we became more and more used to dealing with the home oxygen, until, it almost felt like a normal part of our routine. There are a few stories that I would like to share with you.

Firstly, as I mentioned, when at home, Llewellyn was connected by metres and metres of plastic tubing to the oxygen concentrator. What no one mentioned to us was how the tubing could become a trip hazard. Poor Llewellyn was so good and very tolerant every time that I was carrying him and accidentally trod on his tubes, yanking his head backwards!

A week after we were home, I needed to take Llewellyn back to the hospital for a follow up eye appointment. I decided to take the bus, keeping Llewellyn’s protective germ barrier (the plastic rain cover) on him at all times. What I hadn’t counted on was the young toddler in her pram beside us. She loved babies and was very frustrated that she couldn’t see mine because of his plastic bubble so instead, she decided to yank his oxygen tube! The poor nanny looking after her was horrified when I pointed this out to her.

Two weeks after Llewellyn’s discharge saw us heading off to the home office to sort out a visa for him. We were planning on heading back to Australia for a holiday in a few months and needed to get his visa sorted in time. Everything was fine, until we went through security. The guard noticed the bag under the pram and said “all bags need to go through the x-ray machine!” He immediately pulled it out and placed it on the conveyer belt. I said “No – that one’s connected to the baby! It’s got his oxygen cylinder in it!” He was mollified and pulled it back off again very quickly.

We also didn’t let the oxygen affect our plans. After Llewellyn had been home for nearly three weeks, we had a wedding to attend in the country. Drew was to be a groomsman and we really didn’t want to miss it. We rang the hotel to confirm that it would be ok to have oxygen on the premises and then, when the time came, packed up Llewellyn complete with his oxygen, spare cylinder and sats monitor. He was an angel throughout the wedding – he slept pretty much through the entire thing!

 Llewellyn and Joseph - up to no good!