Nattale Norma

Balloon Baby! – Surviving Congenital Diaphragmatic Hernia

To our son- our little miracle. Your journey into this world has been both amazing and terrifying. I have written a diary of what you have been through, from the day of our diagnosis, until the day you were allowed to come home from hospital, as I think it’s important for you to know. You never know, you may need to know in the future for your own medical reasons, or if you ever decide to have children yourself, you may find it useful. I hope you find it interesting too!

I also hope this may help other families that are expecting a child with CDH to know what to expect, and although everyones experience and situation is different, I hope this provides both information and hope, as it is possible for things to turn out well.

I am also posting a video link of our journey at the bottom of this blog that was filmed originally for Channel Four as a documentary on foetal surgery.

So this is the short version.

We never imagined we would have such a beautiful healthy baby after the
devastating news we were given during our pregnancy.

On the 1st May 2009 our little boy Charlie Maddox Leek was born at Kings College Hospital at 35 weeks and 6 days gestation weighing just 4lb 13oz.

Having been diagnosed with having a severe left sided Congenital Diaphragmatic Hernia at our 20 week scan things didn’t look good for Charlie, and we were told his chances of survival were less than 10%.

We were offered the opportunity to have a pioneering balloon surgery in the womb which we were told could improve his lungs and so we decided to go ahead with this. Charlie was delivered with the paediatric team present and was ventilated and given a paralysing drug immediately.

On day 4 Charlie underwent surgery to repair his diaphram by using a patch and his organs were moved back down from his chest. By day 9 we began to see Charlie move a little, and after 2 weeks and several attempts Charlie came off of the ventilator and onto CPAP.

Charlie progressed much quicker than we first anticipated and was moved from Intensive Care and into Special Care after just 4 weeks. He then had a set back whereby he would go blue when he cried and his oxygen levels would fall drastically. Charlie was moved back into Intensive care and this was obviously a really upsetting and worrying time.

We were told that the journey can often be like a rollercoaster and I would definitely agree with this in terms of progress and emotions. However, for a baby with a severe condition Charlie progressed incredibly quickly and after spending 7 weeks at Kings he was transferred to our local hospital for just 1 night. We were then able to take our baby home, without oxygen and breast feeding like any other healthy baby.

For anyone who is interested in the in-depth detailed account of our journey, please find below the diary entries I wrote at the time from the hospital.

MY DIARY

To find out we were expecting our second child we were over the moon. At our 12 week scan at Southend hospital everything seemed fine and we were given a due date of 8th June 2009.

15th January 2009

At our 20 week anatomy scan we were told there was a problem and that it looked like your stomach, bowel and liver were in your chest and that your heart was on the right hand side. We were told by the sonographer that they weren’t sure and that they had never seen this before. They quickly disappeared out of the room and couldn’t answer any of our questions. We were referred to Kings College Hospital and an appointment was made for 4 days later. We were distraught.

Tips for Life! Advice to my Children.

So this is my advice to my children- my most precious in the whole world- the loves of my life- my heartbeat.

‘Life is 10% what happens to you and 90% how you react to it’.

Life can be hard- be strong.

This Is What I Want to Write and I Don’t Care If You Like It or Not!

Can you guess what I’m blogging about yet? …..
So I walk into the viewing area of a public swimming pool and look for a seat. I am with our eldest to watch our two younger children swim. I crane my neck round the corner to try to watch my youngest on a mission to see how many lengths she can swim.There are no seats with a decent view, so we stand in a central spot next to a table with a lady sitting at it.I am flabbergasted! This is the table with the best view in the whole building and the lady hogging it isn’t even watching anyone swim, she’s reading a book! That’s right! Her eyes are on the page, clearly not interested in the pool at all and she could clearly read her book at any of the other tables that don’t have a good view. She even saw that we had to stand up next to her table to watch because we we struggled to see, and she still didn’t even offer to move. One word- selfish.

Selfish (of a person, action, or motive) lacking consideration for other people; concerned chiefly with one’s own personal profit or pleasure- Collins dictionary. Example: the above, all of my examples and my title for this blog!

This shocked me, but there are lots of things that happen on a daily basis that don’t.

Discussions To Have Before You Get Married!

I’m thinking back to 2002 when I met my now husband- Jon. I say met, but we actually already knew each other from college when we were 16. My friend at the time was going out with Jon’s friend and so while they were together, we often smiled and exchanged the odd word or two. This meant that nine years later when we started dating, I already knew a few things about him- where he came from- what he was like at college etc. Nothing too deep though, and quite a lot of what I did learn in the early days involved trivial facts like his favourite film (Point Break), his speciality dish (always stir fry) and what kind of things he enjoyed doing (listening to live music and ski-ing). It’s quite easy after a while to feel like we know someone so well that, when we take the leap from dating to marriage, we forget to discuss the really important things in life, to make sure we’re both on the same page. Without having these conversations, we might find that we want different things or have different opinions, which can lead to arguments later on. Worse still, it can even cause some of us to break up. Here’s some of the things I think are important to discuss before we get married or settle down.

Follow Your Dreams

The sun is shining, and I’m sitting in the garden next to a filled padding pool waiting for the girls to wake up (Charlie is always an early riser so beat me to it this morning!). It’s so warm already and we have no plans today, so we can relax in the garden or do something spontaneous- I love these days! I’m sitting here thinking of what I would like to achieve this year. I think the sun has given me the boost to think I can achieve anything. It’s funny how something as simple and natural as the sun can motivate me. In the winter, I often can’t even motivate myself for a night out. It’s got me thinking about what else motivates us.
I never realised there were so many different types of motivation! I suppose as we are all different, it makes sense that different things motivate us.
We all need motivation to do anything in life, but especially to achieve our dreams.
Without it, we won’t keep going when things get tough or when the novelty wears off a new idea or challenge, in fact without it most of us won’t even start in the first place! Start what? The first step is to decide what we want to achieve and then what type of motivation is going to help us get there.

The Power Of Social Media

We all love social media. If we’re feeling nosy, tired or bored it’s just so easy to access. No need to get dressed up or make excuses to leave, we can literally flit in and out of it whenever we feel like it! But while social media helps to connect us socially online, it can also disconnect us from the real world and those that we love, influence our mental health and manipulate our thoughts. How many of us can honestly say that we have never ignored those sitting right beside us because we are too busy with our heads in our phones? When we’re talking to someone and our phone pings who gets our attention? According to bbc.com three billion people (which is around 40% of the world’s population) use online social media and we’re spending on average two hours every day sharing, liking, tweeting and updating on these platforms. That breaks down to around half a million tweets and Snapchat photos shared every minute. So it’s not surprising that it has such an impact on our lives. From providing a platform for support to causing Social Media Addiction, the power of social media really is vast.

What Age Should My Child Get a Mobile Phone?

Long gone are the days of dragging the cord of the home phone under the door and hiding in the hallway to have a private conversation, or walking to the phone box with a pocket full of coins to make a call from a public phone box. Nowadays, the luxury of having a mobile phone is not only used to make calls, it’s an avenue to access social media sites, search the internet, watch YouTube and play games. In fact, my experience is that children use a mobile phone less for its principle function ‘to call’ than anything else. So it’s not surprising really that many parents are reluctant to allow their children to have a mobile phone. However, at some stage we all know that this is going to change and none of us want our child to be the only one who hasn’t got one. So what is the right age to allow our children to have a mobile phone?

How To Look After Ourselves When We Are Grieving

The shock of losing someone that we love can be so overwhelming that we just don’t know how we can face tomorrow. For me, the worst thing I have ever imagined happening to those I love is dying.

I lost my Dad and my mum’s partner, who I was very close, to within five weeks of each other. When my mum’s partner was diagnosed with pancreatic cancer and he was so ill that he hoped each day would be his last, I realised that the worst thing is not dying, it is suffering.

Five weeks later, the shock and devastation of losing my Dad suddenly to a cardiac arrest caused me to flash back our whole lives together and to carry the weight of any imperfections in our relationship on my shoulders. For the first three weeks afterwards I seem to have walked around in a complete and utter daze. I can’t remember much to be honest. So how can we make sure we look after ourselves when we are grieving?

How Much Longer Will It Take For Women and Men to be Treated Equally?

For many years, and perhaps for as long as history is recorded, women have been viewed differently to men. Not just different, but subservient and weaker. As long ago as the Victorian era, women have fought hard to have the same rights as men. Thankfully in 1903, due to strong minded women with the determination to stand up for what they believed in, the women’s suffrage movement was formed. Women suffragettes stood tall and fought for the right to vote as the men did. Astonishingly, it took activists a long 15 years to win the right to vote and even then, it was restricted to women who were middle class and at least 30 years old, compared to all men aged 21 and over. Extreme measures such as chaining themselves to the railings, setting fire to post boxes and empty buildings, storming parliament, setting off bombs in empty buildings and having battles with police, saw many imprisoned, where they continued to protest through going on hunger strike, only to be force fed. A further 10 years of perseverance saw the Representation of the People (Equal Franchise) Act 1928 which finally gave all women the right to vote at the age of 21. That’s a total of 25 years to persuade the government that women’s views were just as important as men’s! Such an amazing achievement, but such a long long way to go to achieve total equality and for women to be valued in the same way as men. Fast forward to today and many changes have occurred. Women may no longer be chained to the kitchen sink with the pressure to find a ‘good man’ to keep her, nowadays many women work, live alone and are independent, however, there are many aspects of society which still view men as the stronger sex and women as weaker. More often than not, women still take the man’s surname in marriage, men are often handed the bill in a restaurant and feel obliged to open doors for women, yet they are often told to ‘man up’ if they cry. So, how much longer will it take for women and men to be treated equally?

How Much Should We Care About What People Think of Us?

We all feel the need to be accepted, it’s a basic human instinct. Naturally we all want to be liked as gaining approval from others increases our self esteem. We know people judge us, as we judge them, by their opinions and choices, the way they look, the way they speak, where they live, their occupation, plus lots of other things we aren’t even aware of. But how much should we actually care about what people think of us?