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My Cystic Fibrosis baby – what I really needed to know

1
A quick look at my Facebook page will confirm that I have absolutely no issues with over-sharing, so why did I um and ah for such a long time before writing this post? Firstly, I am aware that one day my son may read this and I don’t want him to feel that he has ever been anything less than much wanted and adored. Secondly, as he gets older (at the grand old age of 3 and a bit), I am aware that it is his story I am telling and that I need to consider his privacy. Finally, I really don’t want to scare the bejesus out of any expectant parents because,
SelfishMother.com
2
odds are, this will have absolutely no relevance to them whatsoever.

Which rather begs the question, why have I put pen to paper so to speak? I’m writing this because, following our newborn son’s diagnosis with Cystic Fibrosis (CF), we did what right-minded people do in this situation – we googled and trawled the internet for information. CF is the most common life-shortening genetic condition in the UK don’t cha know? Actually I didn’t – turns out my partner and I were both unknowingly carriers and that gave us a 1 in 4 chance of having a

SelfishMother.com
3
baby with CF – both of you need to pass on the defective gene. Fortunately we also passed on our good looks and wit so its not all bad…

Lives are shortened because the mucus in a CF patient’s body is stickier than most and this causes damage to their lungs (bacteria finds them the ideal environment to multiply which leads to recurrent chest infections and lung damage), as well as issues with their digestive system and various vital organs. Googling wasn’t great. It was the first time I had ever heard my partner sob. It’s not brilliant news.

SelfishMother.com
4
We read generic information, digested statistics and poured over articles designed to break a parent’s heart. I scoured CF internet forums and became slightly obsessed with life expectancy – around the 30’s if you’re lucky.

The majority of new CF cases are diagnosed a few days after birth with the heel prick test. Our son decided that was nowhere near dramatic enough. After a very straightforward pregnancy and 24 hours after a very straightforward, if little early, labour (36 weeks), and a beautiful healthy, titchy boy at the end of it, our world

SelfishMother.com
5
fell apart. It was discovered that our boy had a 2cm tear in his bowel. A SWAT team of medical superheroes were assembled and, after several hours in theatre, they’d saved our boy’s life and attached a colostomy bag for a few months to give his bowels chance to repair.

We were warned that the condition meconium ileus, which had caused the bowel to perforate (1 in 25,000 babies – I mean, seriously, what are the chances….?), was usually connected to CF. The meconium is so sticky it blocks the bowels. While we waited to see if our boy would survive

SelfishMother.com
6
the trauma of his op, we also waited for the results of genetic tests. I clung to the hope that, although 9 out of 10 babies born with meconium ileus had CF, ours was the 1 in 10.

Joseph was about 5 days old when we got the diagnosis of CF. He stayed in intensive care and we returned home that night with a new cloud over our head. Bullshit, it wasn’t a cloud, it was fucking great elephant sitting on my chest. I still find it hard to breath now just thinking about that first evening. There are no words.

There was plenty of self pity: why us,

SelfishMother.com
7
it’s not fair? Well, why not us? There was plenty of fear – not only for my son, for me and my life as well if we’re going to be honest here. Bizarrely, given he was only days old, I cried because I’d read he’d be infertile. I cried because I thought what a shit, shit start to life. I cried because a sledge hammer had been taken to the life I’d been imagining for the last 7 months and some very dark pictures had taken its place. I cried because I felt it would have been kinder to just let him slip away than allow him to suffer with this
SelfishMother.com
8
hiddeous disease. I cried because I felt guilty that it was me that had got pregnant and bought this baby into the world. I felt guilty that I had done this to the man that I loved – stick with me, it perks up in a bit… And mostly, I cried because I just felt very, very sad and very helpless.

Three and half years later and this morning I woke up to find my little boy had crawled into our bed during the night again. He woke up, gave us kisses, hugs and farts. He had a meltdown over not wearing the right pants, trashed the kitchen trying to make

SelfishMother.com
9
porridge, ran around at nursery. He splashed his baby sister (genetic testing when I was pregnant confirmed she did not have CF) more than was strictly necessary at the swimming pool and got told off. We had a Mexican stand-off at bedtime. He made me laugh like he does every day. He made me swear like he does every day. We have the cheekiest, most energetic, enthusiastic, fun loving (as well as the most stubborn and pig-headed) little man – turns out the shitty start may not have affected him as much as I feared. This is what I could never have
SelfishMother.com
10
forseen in the days following Joe’s diagnosis.

Turns out he should even be able to have kids if he so desires (CF males normally have blocked sperm ducts but behind them everything is kicking around just fine) A lot of the info on the internet has failed to keep up with recent developments in CF medication and treatment and there are some amazing things happening. This is what I wish I could have read after his diagnosis

What I couldn’t possibly have envisaged from all the statistics and generic lists of symptoms I read, was the beautiful,

SelfishMother.com
11
chubby, healthy boy who ran me ragged today. I wouldn’t insult anyone’s intelligence by saying its been a breeze, it hasn’t, Joseph’s lungs enjoy playing host to some of the worst CF bugs and his treatment currently involves regular hospital admissions for IV antibiotics. I’m also aware that many people have a much tougher time than us, that its a fairly unpredictable disease and things can change pretty rapidly, but while there are some days when we all we can think of is CF related crapness, weeks pass when it barely gets a second thought.
SelfishMother.com
12
This is what I wish I could have read.

I feel incredibly lucky to have this joyful, crazy little character in our lives. I wish I could have read that.

And my obsession with life expectancy? I came to the conclusion that no one can tell me what the future holds for my son, but neither do I know what it holds for my daughter or any of us. So I’ve decided not to ruin today by worrying too much about tomorrow – sometimes easier said than done, but I’m working on it…

Turns out Joe’s CF diagnosis wasn’t the end of the world, just the

SelfishMother.com
13
start of a slightly different one. That’s what I needed to know.
SelfishMother.com

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We regularly share posts on @SelfishMother Instagram and Facebook :)

- 13 May 16

A quick look at my Facebook page will confirm that I have absolutely no issues with over-sharing, so why did I um and ah for such a long time before writing this post? Firstly, I am aware that one day my son may read this and I don’t want him to feel that he has ever been anything less than much wanted and adored. Secondly, as he gets older (at the grand old age of 3 and a bit), I am aware that it is his story I am telling and that I need to consider his privacy. Finally, I really don’t want to scare the bejesus out of any expectant parents because, odds are, this will have absolutely no relevance to them whatsoever.

Which rather begs the question, why have I put pen to paper so to speak? I’m writing this because, following our newborn son’s diagnosis with Cystic Fibrosis (CF), we did what right-minded people do in this situation – we googled and trawled the internet for information. CF is the most common life-shortening genetic condition in the UK don’t cha know? Actually I didn’t – turns out my partner and I were both unknowingly carriers and that gave us a 1 in 4 chance of having a baby with CF – both of you need to pass on the defective gene. Fortunately we also passed on our good looks and wit so its not all bad…

Lives are shortened because the mucus in a CF patient’s body is stickier than most and this causes damage to their lungs (bacteria finds them the ideal environment to multiply which leads to recurrent chest infections and lung damage), as well as issues with their digestive system and various vital organs. Googling wasn’t great. It was the first time I had ever heard my partner sob. It’s not brilliant news. We read generic information, digested statistics and poured over articles designed to break a parent’s heart. I scoured CF internet forums and became slightly obsessed with life expectancy – around the 30’s if you’re lucky.

The majority of new CF cases are diagnosed a few days after birth with the heel prick test. Our son decided that was nowhere near dramatic enough. After a very straightforward pregnancy and 24 hours after a very straightforward, if little early, labour (36 weeks), and a beautiful healthy, titchy boy at the end of it, our world fell apart. It was discovered that our boy had a 2cm tear in his bowel. A SWAT team of medical superheroes were assembled and, after several hours in theatre, they’d saved our boy’s life and attached a colostomy bag for a few months to give his bowels chance to repair.

We were warned that the condition meconium ileus, which had caused the bowel to perforate (1 in 25,000 babies – I mean, seriously, what are the chances….?), was usually connected to CF. The meconium is so sticky it blocks the bowels. While we waited to see if our boy would survive the trauma of his op, we also waited for the results of genetic tests. I clung to the hope that, although 9 out of 10 babies born with meconium ileus had CF, ours was the 1 in 10.

Joseph was about 5 days old when we got the diagnosis of CF. He stayed in intensive care and we returned home that night with a new cloud over our head. Bullshit, it wasn’t a cloud, it was fucking great elephant sitting on my chest. I still find it hard to breath now just thinking about that first evening. There are no words.

There was plenty of self pity: why us, it’s not fair? Well, why not us? There was plenty of fear – not only for my son, for me and my life as well if we’re going to be honest here. Bizarrely, given he was only days old, I cried because I’d read he’d be infertile. I cried because I thought what a shit, shit start to life. I cried because a sledge hammer had been taken to the life I’d been imagining for the last 7 months and some very dark pictures had taken its place. I cried because I felt it would have been kinder to just let him slip away than allow him to suffer with this hiddeous disease. I cried because I felt guilty that it was me that had got pregnant and bought this baby into the world. I felt guilty that I had done this to the man that I loved – stick with me, it perks up in a bit… And mostly, I cried because I just felt very, very sad and very helpless.

Three and half years later and this morning I woke up to find my little boy had crawled into our bed during the night again. He woke up, gave us kisses, hugs and farts. He had a meltdown over not wearing the right pants, trashed the kitchen trying to make porridge, ran around at nursery. He splashed his baby sister (genetic testing when I was pregnant confirmed she did not have CF) more than was strictly necessary at the swimming pool and got told off. We had a Mexican stand-off at bedtime. He made me laugh like he does every day. He made me swear like he does every day. We have the cheekiest, most energetic, enthusiastic, fun loving (as well as the most stubborn and pig-headed) little man – turns out the shitty start may not have affected him as much as I feared. This is what I could never have forseen in the days following Joe’s diagnosis.

Turns out he should even be able to have kids if he so desires (CF males normally have blocked sperm ducts but behind them everything is kicking around just fine) A lot of the info on the internet has failed to keep up with recent developments in CF medication and treatment and there are some amazing things happening. This is what I wish I could have read after his diagnosis

What I couldn’t possibly have envisaged from all the statistics and generic lists of symptoms I read, was the beautiful, chubby, healthy boy who ran me ragged today. I wouldn’t insult anyone’s intelligence by saying its been a breeze, it hasn’t, Joseph’s lungs enjoy playing host to some of the worst CF bugs and his treatment currently involves regular hospital admissions for IV antibiotics. I’m also aware that many people have a much tougher time than us, that its a fairly unpredictable disease and things can change pretty rapidly, but while there are some days when we all we can think of is CF related crapness, weeks pass when it barely gets a second thought. This is what I wish I could have read.

I feel incredibly lucky to have this joyful, crazy little character in our lives. I wish I could have read that.

And my obsession with life expectancy? I came to the conclusion that no one can tell me what the future holds for my son, but neither do I know what it holds for my daughter or any of us. So I’ve decided not to ruin today by worrying too much about tomorrow – sometimes easier said than done, but I’m working on it…

Turns out Joe’s CF diagnosis wasn’t the end of the world, just the start of a slightly different one. That’s what I needed to know.

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Florist, business owner, mum to two, regular runner, frequent drinker. Swapped the bright (ish) lights of London in 2013 ,after the birth of my son, for a couple of acres in Scotland - chickens, ducks, veggie patch, more babies - all a bit "Good Life" with more internet shopping... www.cfbaby.co.uk

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