Magic wands

One of the first things you think about when you're little one is poorly is "I wish I could swap places with them."  Whether it be a snuffly cold, recovering from painful injections or about to embark on a 4 hour operation; all you want is to make it better, take it away with a magic wand.

I would have given anything to swap places with Amelia so that she didn't have to go through a major operation. But I couldn't. I had to place all my faith and trust in Great Ormond Street Hospital. They don't have actual magic wands but they do have a miraculous team of doctors and nurses.

A few weeks ago I read a live blog by The Guardian that followed a 2 week old baby girl's heart operation. It was fascinating reading, along with the pictures that accompanied the piece.  Whilst the baby was not having the same operation as Amelia, there were many parallels and it gave me an insight of what actually went on whilst Amelia was in theatre. The scale of people and machinery, on which I'm sure any operation relies upon, is huge. There were seven health professionals in theatre with this baby, along with the head surgeon, not to mention the machines that monitor and keep the baby alive.

So where am I going with this? Here's where. Victor Tsang, the senior surgeon at GOSH spoke about many things regarding the surgery but this stuck in my mind...

"I can't give you an exact figure on how much an operation like this would cost. As well as surgery it requires ward resources, intensive care and other scientists supporting what we are doing in other laboratories. But it is very expensive. I would estimate around £50,000."

£50,000!

I'd always wondered how much in monetary terms we 'owed' GOSH for fixing Amelia's heart but never thought that it could be calculated. Yet here it was. An estimate admittedly, and not for the same operation, but it gives some idea of the actual expense. I realise that GOSH isn't completely funded by public donations, but without them the quality of care just wouldn't be the same. Each donation is like that magic wand; helping children and their families.

I couldn't possibly raise that amount of money in my lifetime, even £5,000 would be a stretch but what about £500? My current target is set at £200 but somehow it just doesn't seem enough.

I've raised around £150 so far and I am so very grateful to all those who have put their hand in their pocket and donated. Family, close friends and people I've not seen for years; even people I have never met! I'm so touched that they care about Amelia's story and want to help towards others.

So go on, your turn. Click here. Just a few pounds, it doesn't have to be a lot. Then you can sit back and feel proud that you've helped make a difference to a child. You've waved your magic wand. x

The long and winding road...

OK, so the road may not be that long at the moment or winding but the training is well underway and I'm starting to get into a routine. I'm currently working on my first mile out of a total of three (technically 3.1miles, but let's not get picky). I have three months, so a mile a month is what I'm working on. Maths in action there folks!
My training really turned a corner this week (excuse the pun) as my body gets used to jogging in the real world and I start to get the hang of pacing myself. No more whirring of the cross trainer, hidden away in the spare bedroom with my eyes glued to desperate housewives. Oh no.. Time to let the public see me sweat and hear me huff and puff like Darth Vader. Nice.
Now, Facebook followers would have perhaps read the status updates, one in particular stating, "Jog done. I'm not gonna lie, it ain't fun." I was feeling particular fed up that evening, seriously questioning my ability to run this 5km. When I began training I started out with a short circuit round the block, about 0.5km, and would repeat. In just a couple of weeks though I was running round in circles three or four times. It had got boring and I was loosing my motivation. I had tried taking the iPod along for company but every time I ran a few metres the silly headphones would just pop right out of my ears! *sigh*
So the next trip out that week was to be different. Still no iPod, the battery was now flat, but I had a new route planned; a longer circuit that I would not have to keep going round and round and round. Off I went, with a spring in my step and I did it! My first mile. Yay! Need to perfect it a little before we set to work on the next mile, but I'm starting to feel confident about this challenge.
Thank you to all of you who have sponsored me so far. It really does help to keep me motivated and determined to achieve something I've never done before. xxx

Here comes the science bit...

I've realised that a fair number of people do not know the whole story of Amelia's heart condition, what it is, how it came about and what was done about it. This is completely due to me not saying very much until now.

On Wednesday 28th April 2010, at 4.48am, Amelia was born. She had swallowed meconium during birth and she was very phlemy and bunged up. This wasn't a huge concern, doctors helped to suck out the mucas and things were improving.

I had yet to fully establish breastfeeding and so to help a fretful and hungry Amelia get some food in her tummy she was given a bottle of formula. Amelia guzzled it down so quickly that her newly developed skill of swallowing could not keep up and she choked. She was taken down to the Neonatel Intensive Care Unit (NICU) and had an x-ray to check if the milk had gone on her lungs. For any new parent this was a worrying time but little did we know that this was the beginning of a string of events that, looking back, was all happening at the right place at the right time...

The doctor on duty that night was a heart specialist. Looking at Amelia's x-ray he could see that her lungs were clear, but there was something not quite right about her heart. There was a visable hole between the lower two chambers and as a concequence one of her valves was not functioning properly. Amelia had been born with a congenital heart disease called Tetralogy of Fallot which reduces the heart's ability to circulate oxygenated blood.

This diagram provided by the British Heart Foundation illustrates the differences between a normal heart and a heart with Tetralogy of Fallot.

Here comes the explanation... concentrate!  The Ventricular sepal defect (VSD) is the hole between the two chambers. Amelia's operation involved sewing a patch over the hole. The narrowed pulmonary valve has been widened so that blood can flow to the lungs properly.

Although Amelia's heart is technically 'repaired' it will never be completely normal. The pulmonary valve is still abnormal and does not close properly meaning blood leaks back into the right chamber. As a result the valve has to work harder than usual and, over time, may become enlarged. This will have to be monitored over the years and it is possible that Amelia may have to have another operation when she is a teenager to replace the valve.

In addition to having her heart repaired, Amelia also had to have a the artery to her left arm (the subclavian artery) moved. It was unusually coming off the artery to her lung (left pulmonary artery) and had to be repositioned to where it should have been formed, on the aorta. This was a straight forward procedure and carried out successfully. The way Amelia's artery was formed is unconnected to her Tetraolgy of Fallot.

Hope this all makes sense! It's taken a year for me to get my head around it all, so if you got that all in one go you've got a good Biology brain!

Thanks for taking the time to read this extra long post.

xxx

Pause for thought...

Rewind 7 weeks ago when Amelia had her op and it's as though someone pressed the 'play' button. Since the age of about 8 months her body had effectively been on pause. Every single ounce of energy was being used to power her heart meaning she was not developing physically in the ways most other babies do. At most she would roll onto her side and had mastered sitting without support.

Fast forward to today and I have a little girl who is ready to get moving - at last! I marvel at how each day Amelia is getting visibly stronger and the speed in which she is changing. In just one week she has gone from lying on her back to rolling over, doing push ups and an attempt at crawling that makes her go backwards!

I know I've said it before, and I will continue to say it all the time I raising money for GOSH. Amelia's future would not be looking so positive and exciting if they hadn't fixed her. GOSH continue to help poorly children and support families every day. Our stay was a short one and a successful one. Not all families are as lucky as us. If you are reading this and haven't donated yet, please do. For the research and technology that enables children to get better; for the parents who need a place to stay whilst their child is in hospital; for the continuing re-development of the hospital, making it a modern and comfortable place for children to be.

£10 - could contribute to the building cost for the new Heart and Lung centre or

could buy a large tin of paint to help decorate the walls and ceilings of a new ward

£20 - could buy four special neonatal masks, small and delicate enough to fit a new born baby's face

£35 - could help towards the cost of an operating microscope for one of the surgical theatres

£50 - could pay for five nights up keep of a patient accommodation room

£100 - could buy four toys specially adapted for the children to help with their rehabilitation

£500 - a respiration monitor to track a child's breathing

So there it is. Put a little in the pot and be part of something special. xxx