Wednesday 27 October 2010

RSV and the NHS

RSV, have you heard of it? If you answered yes I am guessing your either a health professional, a parent of a premature or sick baby or an adult with a long term health condition. Until last year I had never heard of RSV.

It stands for respiratory syncytial virus, and has symptoms not dissimlar from the common cold. Like the common cold it is, well, common, and raises its ugly little head from November to March each year. RSV can cause bronchiolitis, which for small babies and children, and those with suppressed immune symptoms, can be devastating. It can cause the baby to be readmitted, and in serious cases, bronchiolitis can be fatal.

When Joseph was in hospital, we were told he had Chronic Lung Disease. I was devastated, a disease? It took me a while to get my head around the fact that CLD is not a disease as such (although it can be) its a definition used by healthcare professionals. Joseph had been on oxygen for longer than one month, so was deemed to have CLD.

Now in the UK if a baby has been diagnosed with CLD they may be eligible to have a monthly injection over winter called Synagis (Palivizumab). This injection, from what I understand, does not prevent RSV, but lessens its severity and course, and can prevent readmissions.

Of course, there is a catch. It's expensive. Around £700. Per dose. And the injections happened once a month for 6 months. That, my friends, is a lot of money, and given that the rate of premature babies does not go down each year, it goes up, its a cost the NHS is going to have to learn how to deal with.

Now at the eleventh hour, it was decided Joseph did not have CLD, or not to such an extent as to warrant the RSV injections. At the time I was very upset, and was so stressed out by everything that had happened, I didn't appeal. I really should have done, but at the time, it just didn't enter my head to.

And as it happened, Joseph had a perfect winter. A couple of minor colds, but nothing serious. So, annoyingly, this justifies the PCT's decision not to fund this injection.

As I've got more active in the premature baby community I can see a major disparity between various PCTs throughout the country, and it makes my blood boil. How can it be so different in North Manchester compared to say North London?

The other thing that annoys me, is that private health care in this country is so restrictive. We are members of a private health care scheme but it doesn't cover outpatient drugs or preventative treatment, so they wouldn't cover the shots either.

And I'm not sure what the answer is, because not only did the NHS save £4200 not giving us the medication, it didn't pay out for any inpatient stays for Joseph either. What is a big shame is that we were enrolled in an efficacy study for the RSV jabs, but because the funding was pulled, we were no longer in the study. I think it would have been interesting to keep us in and to compare how Joseph did compared to other 27 weekers who did receive the Synagis.

So as we approach winter again, my thoughts are with all of you who have small babies, and children with suppressed immune systems, and I hope you all have a kind winter. 

Monday 25 October 2010


Toddlers seem to spent a lot of time getting very frustrated. They want to do things, they want increasing levels of independence, and they want all these things now, immediately! Dealing with Joseph's frustration is becoming an increasing part of my day, which is fine. Until today.

We attend a lovely baby group, in our local village where we used to live. Despite moving we continue to travel to this one as we have been attending for over a year and have made some very good friends.

Today Joseph was surrounded by girls, all around the same age as him. Four of them, including Joseph, were happily playing with a pink baby stroller. Each of them took turns to walk around with it. The stroller was very light, and each little girl took at least 10 - 20 steps. Then Joseph had a go. He managed 3 steps then fell into a heap.

He was inconsolable, as the three others continued to play. It wasn't the bump, worse bumps happen on a daily basis and are marked with a quick kiss and a cuddle. No this was different.  Joseph finally realised something. He can't walk.

I've been ok with Joseph not being able to walk. On corrected age, he is only 14 months, so he's not officially developmentally delayed, the milestone for walking is anything up to 18 months. I can handle people asking "is he walking yet", and having to explain his story......again.

What I can't handle is Joseph realising he is different, without me being able to explain to him why. I just want to tell him that he's special, that he was born 3 months early, that he wasn't expected to be able to breathe on his own or eat on his own, and he has done an amazing job catching up with everything else, and that walking can wait until he's ready.

So Joseph, if your reading this, you are amazing, and it doesn't matter if you never walk, you have achieved so much so ready, you can fly. 

Thursday 21 October 2010

Naming the Boy Child

I love twitter for blog ideas, thank you Jane. My dearly beloved husband is a traditionalist, really quite stuck in the 1950's, so naming the boy child could have proved to be difficult. However, when pregnant, although we opted (ok he opted and I followed) not to find out the gender, we were certain the child was a boy. Husband thought this because most first borns in his family are boys. I thought this because I went off chocolate. No girl would put her mother through such a trial, having already been denied camembert, brie and gorgonzola, and a soft boiled egg. Oh and sushi!

We quickly decided on Joseph. We liked it, a strong traditional name. I was a little concerned that it was perhaps a bit, um, er, too biblical. I am a Christian, this is true, but not a traditionalist, and my husband has a fairly much ambivalent approach to religion (unless the chips are seriously down and then he's on his knees with the rest of us.) When I consulted the baby book I became less sure. "Jehovah increases" didn't seem to fit. Did it?

So, the day prior to Joseph's birth, having already been told that I would deliver the following day, we had an emergency scan, and the estimate of Joseph's weight was given. 800 grams. Tiny in anyone's language. As it turns out this was wrong, buy 150 grams. In quite the wrong direction. Joseph was going to need all the help he could get to increase!

So his first name was decided. We quickly chose Robert as his middle name, for two important reasons. Quite by chance this is my husband's middle name, and my own dad's first name. My dad cried when we told him. I omitted the fact that my husband has Robert as a middle name!

The night prior to Joseph's birth was frightening. I lay there trying to think of different things to keep my brain occupied, as mentioned before I was not allowed to sleep in case I developed full blown eclampsia. So I decided to give Joseph an extra middle name. I wanted something special, unique. Something that told his story. I chose Bowden, proncounced as bow of ship- den. Bow-den.

I have the sad misfortune to be a Richmod Tiger's fan. They are a wonderful, heritage, Australian Rules Football team with a wonderful rich history. They just so happen, at the moment, to be slightly struggling. Ok for years I have had nothing but disappointment. But hey ho, once fan and all that.

Anyway I chose Bowden after this bloke, not the biggest of players, but one of the bravest and fairest. And the Tiger's theme song really resonated with me during those long dark hours.

Oh, we’re from Tigerland,
A fighting fury, we’re from Tigerland,
In any weather you will see us with a grin,
Risking head and shin,
If we’re behind then never mind,
We’ll fight and fight and win.
For we’re from Tigerland,
We’ll never weaken ’til the final siren’s gone.
Like the Tigers of old,
We’re strong and we’re bold.
For we’re from Tiger yellow and black,
For we’re from Tigerland.

I just thought that summed up this little life that had a massive task and fight ahead, and even I wouldn't stoop to lumbering "Tiger" on a child as a middle name.

And a few months later, I received in the post a poster from Joel Bowden, signed simply "Dear Joseph, Aim High, Joel"

Tuesday 19 October 2010

Is Gay OK with Me?

Tonight some of my twitter friends have been tweeting about this. Personally I found the article, whilst written in a polite, gentle tone quite scary, homophobic, and downright dangerous.

To give you some background I was brought up by a mum who was a very lapsed Catholic, and my dad who is an agnostic Anglican. I went to Sunday School and Church with dad, because he wanted us to have some religious education, and then once we were old enough we could make up our own mind. I decided at 12 that I didn't know enough about the faith to decide, so opted not to be confirmed.

At university I met up with Christians, really, for the first time in my life. I learnt more about what it meant to be a Christian and I made a personal commitment to Jesus. I was a devoted Christian for a long time 7 years or so. Then I had a big event in my life that changed everything, which I won't go into here.

So since that time, I was 23 when I stopped going to church regularly, I have a deeply personal faith. It is not a religion, and I am not a card carrying Evangelical Christian anymore. I guess I like to say I am a small "c" christian, the same way some Australians call themselves small "l" Liberal. I still attend church, a Unitarian church, which accepts everyone, regardless of your background, your beliefs or your sexual orientation. Our minister just so happens to be gay - very gay! He's wonderful, just an aside, he trained in drama initially, is from Boston and has the most camp voice you have ever heard, my favourite quote "if religion is just theatre, then I want a better costume!" He was also a premature baby, and one of the first people to come and see Joseph in hospital (he was mistaken for the baby's father! How we laughed!)

So now I am a parent, how would I feel, like this momma in Texas, if my son had a gay teacher? To be quite frank, I'd be delighted, it would not concern me in the slightest. If there were questions, we would deal with them, as a family. I fail to see how a teacher's personal life affects the way they teach. At present, in the English curriculum, the poor teacher is so busy trying to cover anything they barely have time to scratch the back of their heads, let alone discuss their personal lives.

When I was 7 I had the kindest, sweetest swimming teacher ever. She took me for swimming for asthma classes, and she was so patient and caring, I was terrified of the water. With her coaching and encouragement I became a decent swimmer. To my delight we met again when I was 14, and she was my physical education teacher. I noticed kids were teasing her, and being nasty, it turns out she was a lesbian. I am sure I knew other gay people by then, and couldn't see what the big deal was? The relevance of who you cuddle at night, who does the shopping with you, and who you choose to spend your life with was lost on me.

And still is.

Is Gay OK with Me?

Why yes, absolutely!

Monday 18 October 2010

Wave of Light - sensitive

Last week was International Pregnancy and Infant Loss week, culminating in the International Wave of Light. We light candles to commemorate tiny lives that have been lost .

Until Joseph was born early I was entirely ignorant about baby loss, despite myself having had two miscarriages. My miscarriages were traumatic experiences, true enough, and each of them marked a massive turning point in my life. Following the first, my marriage broke down (not due to the miscarriage itself but events around it) and the second marked the demise of another relationship and my decision to move from Australia to England.

To me, a miscarriage is so hard because its a loss that is hard to quantifiy. Biologically speaking when you have a miscarriage (and really I am talking about common ones before 12 weeks) you have lost a collection of cells not a baby, not a viable human life. Emotionally you have lost a baby. To a woman who has miscarried, that baby was very real, and the loss is raw, and it is so hard to grieve, you did not know the gender, you can't name the baby, and no one in authority acknowleges that that life was real. A candle lit for that baby gives you a focus, if only for an hour. 

Before Joseph was born, I had not knowingly met a mum who had lost a viable baby. Which to me, seems remarkable, and I can only think that perhaps I have friends who have not opened up about their losses. When Joseph was in hospital three babies died. I finally learnt what many others already knew, that human life is incredibly fragile. I have a dear friend who lost her twin baby girl, and her existing baby, although a joy, is a daily reminder of how the other little girl should be. Being the mother of a premature baby, who had been born so early, and so small, it is hard not to feel an element of "survivor guilt". Why did Joseph live, why is he so well? Why was his potentially deadly stomach infection caught so early when so many other babies are not so lucky?

Since coming home, I have been very active online, and have met so many people who have had devastating losses of babies who should be in the arms of their parents. There are so many reasons babies die, but the sad fact is that the rate of stillbirth has been stubbornly stuck for years, and there are no signs of the rate going down.

And its not just stillbirth and miscarriage we think about it that week, we think of any baby who has died before the age of one. It is very common for premature babies not to make it, infection, immature breathing and congenital problems.

We also grieve those that are terminated for medical reasons. I feel this area is largely misunderstood, and is the last taboo in this area. We can speak more freely about other forms of pregnancy and infant loss, but this area is still in the dark.

For the first time, I know a baby who died in this way, her candle was lit on Friday night, and her life remembered. This baby had a heart condition that she would not have survived.

But, you don't need to wait for a "week" to remember a baby who has died. And it doesn't need to be "your" baby. I strongly believe that lighting a candle helps focus our thoughts, and helps facilitate our grief.

In loving memory of Emily, Isla and Angel, and all the other little lives lost and remembered.........

Saturday 9 October 2010

Life online

I use the internet, a lot, more now than at any time in my life. I love Facebook and Twitter, I use forums a lot. I think this increase in my usage coincides with what has been one of the loneliest and most socially isolating periods of my life, as well as one of the happiest.

I do attend baby groups and activities, but most of these are for babies under 1, once babies turn 1 parents tend to return to work, and their children go to nursery. Baby groups only run once a week, and usually only for 90 minutes. The rest of the time, I am with Joseph, and at 17 months, whilst a lot of fun, still sleeps a lot and his conversation leaves a little to be desired at this stage!

I love to spend time talking to other mummies on line, and keeping up with the news. I enjoy hearing about the minutae of other peoples' lives and what people are thinking and getting up to.

But I have been considering of late, how I can better utilise my time. My husband and I have started fostering training and there is a lot of work to do to build our portfolio of evidence to take before the fostering panel. Christmas is coming, and money is tight, which means I will make a lot of presents rather than buy. And then there is the small matter of income generation, could my time be spent making things, offering my services to businesses, or generating an income rather than frittering it away on line?

I miss the hubbub of work. I miss the walks around the Quays at lunchtime with my friends. I miss chats by the coffee machine. My work involved a lot of interaction over the phone, and I find being at home quite lonely in comparison.

Also once we start fostering we need to consider how much information we give about our day to day lives online, and also we need to set a good example which means not spending all my time on line messing about, and lets face it, a lot of it is just messing about rather than a good use of time.

Would I miss it? Would the online world miss me? Or will I be a better person for getting a bit more of a life offline?

Friday 8 October 2010

I'm always travellin'......

One thing my husband and I have always had in common is a love of travelling. When we discovered we were pregnant, we were very much hoping, that although our budget would be somewhat constrained, we would not have to give up our adventures.

Joseph's first trip abroad, from Manchester UK to Australia, was booked when he was two weeks old, in ITU, strung up to all manner of machines and monitors. I must have been insane! I booked a long layover in Dubai, just in case he was on oxygen or needed assisted feeding via a PEG tube, so that we could renew equipment etc. As the day approached, and Joseph was by then 7 monthos old, it became clear that the layover would just be for fun, Joseph, was to all intents and purposes, normal!

So we travelled downunder and had a fabulous time. We have since done several local trips, including a long one to London to stay with a dear friend and her son also born prematurely.

We have just returned from an enormous driving trip, from Manchester to Germany via Dover and Calais. Joseph is a fantastic traveller, he sleeps well, he loves trying new foods, and he enjoys the process of travelling, meeting people and having new experiences. He is an absolute delight.

It's easier and harder now, at least now I don't have to worry about sterilising bottles, and lugging loads of stuff with us. He can drink with a straw and is the neatest eater I have ever met, so its not the end of the world if I have forgotten a cup and a bib. But now he is increasingly mobile, its ever so hard. He's not content to stay in the sling, or in the car seat, or the pushchair for any length of time, but the world is just not created for crawling toddlers.

Except German service station stops. For some reason the Germans, bless em, have thought of the tiniest travellers, gorgeous, well equipped changing stations, and large indoor play areas usually with ball pools and crawling tunnels.

I can't wait for our next adventure, again to Australia, in February. Just myself on my own with a 20 month old. Piece of cake??? Preferably Bienestick - Joseph's newly discovered favourite!

Wednesday 6 October 2010


It never occured to me NOT to baby wear. As soon as I started thinking about how I would take care of my baby I knew I would wear him/her whenever I could. When Joseph was born prematurely, I knew baby wearing would be even more essential to his care and development.

I was dead against wrap around slings to start with. They looked so complicated, how would I ever tie it, get my baby in, sort it all out on the run??? I found a wonderful shop in a tiny Yorkshire village. They spent a long time with me looking at different slings. My first visit was whilst pregnant, and we had a very spooky conversation about the importance of baby wearing premature babies. Little did I know that just three short weeks later, I would have my very own tiny miracle.

Whilst rooming in during Joseph's last two nights in hospital, I took my sling, and practiced taking him around the ward. It felt normal, natural, and I felt whole again, with my tiny baby next to me.

Over the coming months I wore Joseph often, doing housework, going on trips to the shops, whenever I could.

Even now, at 17 months of age, Joseph is still worn, admittedly not as often, but still more than weekly. I have a fancy mei tai sling, its fashionable, comfortable and safe.

I was amazed to read on tweets today, the start of International Babywearing Week that in the US the practice of babywearing is under threat. What I love about  Babywearing is the spirit of independence. All you need is a length of fabric and some knowhow. You don't have to spend hundreds of pounds. Slings are natural, they don't use a lot of carbon to produce them. They take up no room, you can put one in your carry bag.

The U.S. Consumer Product Safety Commission is proposing to regulate the babywearing "industry" potentially this could mean that cottage businesses producing slings could go bust, and that "slings" will now belong to big companies.

It's true that there have been some deaths of babies associated with sling usage. Surely education, providing instruction to users, and setting good examples is the way of the future, not excessive and punitive legislation.

Baby wearing is a traditional, safe practice. Babies die in pushchairs and prams, but they are not legislated against. Babies die in cribs and cots.. Baby deaths in accidents are tragic, and sometimes preventable, and education is the key, not banning practices that have been around since time immemoriam.