Monday, 25 May 2015

Cystic Hygroma: Our Story So Far

My daughter was born with a Cystic Hygroma and until I had her I had no idea what this was. You can read the full back story here but I just wanted to share an update and try and help any parents out there who are at the beginning of their journey with the condition. I could barely find any positive information out there regarding babies who had been born with them and that was pretty scary as a first time parent.


This is Isla as a new born and her cystic hygroma, aka Mr Cyst, is rather large. We worried about whether it would affect her breathing, eating, movement, development and comfort. We worried it would get bigger. We worried it would spread. We worried it would affect her face. We worried it was linked to a genetic condition, as google so quickly tried to tell us. Basically we worried and worried and then worried some more. 


I feel like a terrible, terrible mum for saying this but I genuinely cried the first few nights I had her because I thought people would think she was ugly and speak about her behind my back. I was scared people would look in the pram and then jump away. I blame the post pregnancy hormones because this is so ridiculous. Who would bitch about a newborn baby?! 



These photos are Isla at between two and three months old. We had to have genetic testing, through a blood test, done a few days after she was born and we got the results to say she was all clear a few weeks later. this was such a relief as a lot of Cystic Hygromas are linked to genetic problems and syndromes.


This is Isla at seven months old. Her Cystic Hygroma seems smaller as she is growing. We have regular checkups with her consultant to monitor her progress and chat about what’s going on. 



Here she is at nine months. We got photographs done at the hospital so that they have a point of reference. Cystic Hygromas are notoriously hard to measure due to their fluidness. The consultants also tried to get an MRI scan done but let’s be honest, a nine month old baby was never going to go to sleep and stay completely still in a noisy machine. I tried for over an hour to get her to go to sleep and when she finally did nod off, the minute I placed her on the table, she woke up screaming. It must have been super scary so I don’t blame her. 




And here she is now. My Cyst has still stayed the same size but Isla has grown and grown so he is often missed by people not looking for him, unless she’s wearing something particularly revealing! We are currently waiting for a another MRI appointment to come through now that she’s turned one. They weren’t happy to use General Anesthetic on a child under one. Hopefully we will then have a better idea what’s going on with him and how the surgeons will proceed. 

It is likely to be a procedure called Sclerotherapy where they inject the cyst with a sterile bug which will aggravate it, building up scar tissue, which will stop the fluid leaking into it. Or it will be a proper surgical operation to go in and sort it out.  

Mr Cyst doesn’t particularly bother us anymore but it’s more for Isla’s sake that we plan to do something about him while she’s still quite young. It means she’ll recover quicker and easier from any operations. It also means there will be less stretching of the skin as she grows, which could result in a bigger scar when she’s older. Unfortunately, kids can be cruel so we’d like to sort him out before she starts school. 

So when the time comes for you to leave us Mr Cyst, we will be happy to see you go but we will also miss you as you have been a part of Isla since day one. We’ve had sad times with you and funny times and we want to let other parents know that you and your kind aren’t always too much to worry about.

If you want more information about Cystic Hygromas, click here.

15 comments :

  1. I had absolutely no idea! I can't say I have ever noticed. She is so beautiful and Mr Cyst is obviously hidden in that! And the uber cool clothes she wears, the trendy little bean! Xxx

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    1. Aw thanks lovey, that means a lot to hear :) xx

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  2. If I'm honest I have never noticed anything different with Isla! She's gorgeous and if I hadn't read this I would have still been unaware haha. I agree it's best to get it sorted when she's little though, they recover so quickly at this age xx

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    1. I used to hide Mr Cyst and by the time I got ok with him, he wasn't half as noticeable!! I feel so bad for hiding him now. It's so true they recover better when they're little :) xx

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  3. I thought I would be the only one to say that I honestly never noticed! But I genuinely didn't, but I'm not sure if that's because I've only been following your blog for at few months. But she's gorgeous and I hope that everything goes well for her :) xxx

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    1. Haha a lot of people who see her in real life say the same. He's a slippery character Mr Cyst and often hides away these days! Thanks so much lovey, that's sweet of you :) xx

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  4. Aww it must have been a scarey time for you. My daughter has had 2 MRI scans- the first at 7 months and they did put her out so I would treat your case as good because if they were really worried they would have done it. I hope you get what I mean-I'm not sure it is how I mean it :)

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    1. Oh bless you're daughter. I hope she's ok now. Definitely. The fact there's no rush at the moment is a good thing for sure :) x

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  5. I honestly had never noticed it in any of your photos of her or any of your vlogs. I'm glad it wasn't linked to anything more serious and I hope you can get it sorted while she's young enough to not really be too bothered by it. And well done for raising awareness because I'd never heard of it before.

    Rebecca x x
    www.percyandgrace.co.uk

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    1. Definitely. That was the main thing for us, that it wasn't linked to anything else. Thanks lovey, just wanted to raise awareness because I read nothing positive on the internet when she was first diagnosed. It's the best part of blogging...helping others :) xx

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  6. I cant even begin to imagine how frightening that must have been, oh my goodness. I honestly had no idea at all - I've looked at photos of Isla on Instagram and watched her in your videos for ages now and I`d never noticed at all - all that beauty was all I saw from little miss GlamPants! And I'm sure thats all anybody else who looked at her saw too but you're certainly not any kind of bad person for worrying what people would think - ANYBODY would have those worries and if they say otherwise they're liars!
    I hope its all sorted out soon while she's still too little to remember the hospitals and so on. xx

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    1. Aw thanks petal. Haha miss Glampants - love it!! It's a hard one because you don't want to think everything is all about looks. However, when it comes to your kids, you just don't want them to have anything that might ever give anyone else ammunition to be nasty to them. Will keep posting about it from now on when we have updates, to help out other parents :) xx

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  7. I have never noticed in any of the pictures you have posted! She is beautiful

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  8. I am 11 weeks pregnant and my baby was diagnosed with Cystic Hygroma and it is located at the back of the neck. I am worried.. I am scared. I have a 9 year old already and have been dubbed high risk. I have been doing a lot of research and looking for those who have been in my shoes..

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