My baby is broken

September 09, 2018  •  12 Comments

My baby is broken, She'll never be fixed...

I feel it's time I lifted that weight off my shoulders and updated you on how far we've come in the last 2.5 years with our princess.

Its been a journey and its taken some time to adapt... My baby is broken, that's the words I had running around my head, I couldn't get my head around what Spina Bifida meant for her.

*Spina Bifida 


*Spinal cord


Can you even imagine your precious newborn being born and hearing these words? She had a blister on her back, filled with her nerves and spinal cord in spinal fluid.. To this day I still can't believe it happened and wasn't picked up on her ultra sounds!

Her lesion was closed, nerves and cord safely dropped back into her spine, she was fixed? No not fixed the damage is done.

So here we are today nearly 2 and a half years later. This is what we know;

At 6 weeks she had an MRI scan, its showed she has a tethered spine, this will mean forever follow ups with her neurosurgeon and risk of needing a detethering, usually around the age when a child has a growth spurt; 4-5 years and 9-10 years old. Signs will be change in bladder or bowel, loss of movement and paralysis.

Just one of our worries.

At 3 months she had her urodynamics, this told us she has a neurogenic bladder; this condition requires Intermittent Catheterisation, every 3 hours, to drain her bladder and keep her kidneys safe. Years ago children wouldn't survive past teenage years due to kidney damage, over the years we have learnt how to protect their kidneys by doing the I.C procedure.

We then began to learn she had a neurogenic bowel too. For us its been the most difficult thing to manage and live with, we do an irrigation x2 a day to help empty her bowel. Without this procedure Remi was becoming very sick, her weight was dropping.

We have her at a healthy weight and very good appetite now, but things in this area aren't perfect yet. Her consultant has mentioned an ACE procedure where her appendix will be used to make a hole in her tummy so we can flush her bowels from the top of her colon giving her a better empty. This will be a decision we hope she can make for herself one day.


*oxybutynin  x2 a day

*trimethoprim x1 a day

*Senna x2 a day 

*movicol x1 sachet daily 

That's 6 lots of meds I have to give her everyday, since birth and forever.

She walks though, in fact she walks bloody well! She has muscle weakness; her ankles are weak and loose flexible, a good pair of supportive boots or her braces work well for her.

We've come to terms with the management of taking care of our princesses needs, its all we now know and all she will know.

Things are about to become unbelievable now and very very unlucky....

On July the 3rd she become very poorly. We had open access to the ward due to her SB so I took her to get checked over.

She was having very high temps and was in too much pain to be able to move. She had an horrendous rash. A UTI we initially thought. Nope! So just a virus then?

This continued, and everyday I took her back. On the 4th day I was concerned because she had red eyes, her hands and feet were red and she wouldn't let them be touched. A doctor mentioned Kawasaki Disease but said how rare it is so don't worry, after a consultant swabbed her throat and said it'sprobably strep throat...

I went home with some antibiotics thinking thank god she'll feel better again soon.

The next day she was 100 times more poorly, her lips were peeling and she was inconsolable. I took her back!

After a blood test she was quickly admitted and I was diagnosed with Kawasaki Disease....

At her sickest :(

I couldn't bloody believe this was happening, you're being over-cautious I told him. He said he was the oldest doctor on the ward and he was the least likely doctor to be over-cautious! He was Remi's paediatrician, he was there the day she was born. Just bad luck he told me for the second time in my life. He acted quickly and I thank him very much, despite our bad luck Remi wasn't to be failed this time. 

She had the treatment; an Intravenous Immunoglobulin transfusion.

Started to feel better

It was awful, second worst time of my life. 5 days in hospital. She got better, but of course this rare childhood illness has risks. It cause the blood vessels to become inflamed which can develop aneurysms to the heart, Remi was treated in the 5 days which means aneurysms are less likely. We did 8 weeks on a high dose of aspirin to thin her blood. 

We had heart echo and ECG, we have been extremely lucky she didn't develop any. We continue with this and she has regular check ups with cardio. just another specialist to add on the list.

Another 2 years of checks and if no aneurysms we can wave goodbye to Kawasaki's disease.


As you can image I felt blame, why her? Her SB is my fault, I broke my beautiful princess, I failed to grow her properly and now this..

I felt god wanted to take her from me, she's not supposed to be here. I quickly fell into a state of depression, I had my first panic attack.

What the hell was happening to me, my hands like pins and needles, I turned into Edward bloody scissor hands, I thought I was having a stroke.

Richard was more pissed off that not only did his daughter have Spina Bifida, his wife turns into Edward bloody scissor hands haha... sorry but you have to lol

I started cognitive behavioural therapy. Despite the crazy therapist, it helped me lots. It's something I control especially when things begin to pile on top of me.. Breathe, I understand it and that was the first biggest help.

Its been over a year since that second shock in her life (bless her teeny tiny precious heart)

In my crazy life and schedule we muddle through, business is blooming.

Well I am who I am and they say it happens to the chosen ones, the ones who can cope, the ones who "can" , and I'm not going to lie, I'm not the sort of person to do nothing.. I hit life 100 miles an hour and it hits me straight back, I'm a busy body always with a plan, always got a project and something to do.

When life is terrible, take a breathe let the house get messy feed the kids maccy Ds.. Give it time because time is the greatest healer, time to adjust to what ever life throws at us because the impossible is possible and if I can continue to run my own business, take care of my boys, dog and husband (even tho he's the feeder). I couldn't do it without him, we'd all starve to death lol then my sweet princess will be ok.

I want you to know I'm happy, I feel extremely blessed and despite the downs I wouldn't change a thing... having the downs make the ups a whole lot more amazing if we never had downs.

Anyway my husband is picking his nails (annoyingly) refusing to stop because me typing this is more annoying apparently... Arsehole ;)

My journey continues and I thrive to photograph my beautiful children <3




Molly Guilford
Oml Claire, you should be incredibly proud of yourself, for all you do for Remi. One day she will realise that she has the bestest mummy everI look up to you because you are my inspiration! Love u xxxxxxxx
Awwwwww babe just read your story bless poor remi but your family is strong and I watch your stories and I laugh with you all your such a wonderful family full of life and love ❤❤
An amazing read, what an inspirational family. ❤️
Carlos Fandango aka Popeye Photgraphy(non-registered)
Wow, I have never met you, but feel like I know you, I discovered you on FB through your breathtakingly outstanding photography skills, you are an open book, I'm the same, you share your photographs and stories of your family, which make people like me feel like they know you.

Since the birth or Remi, I am sure I represent many many of your FB friends and followers, have watched in awe of how you and Richard have coped with spina bifida, and now through your blog, everything else.

Wow, Remi, even with all the difficult things she has had to cope with in her short life so far, has four amazing people in her life, her brothers, her Dad and especially her loving Mum.

You don't need me to tell you, you have a family to be extremely proud of, you are all perfect for each other, and Remi could not have anyone better in her life.

I hope Remi's life is as comfortable and as normal as it can possibly be, I am ignorant to many illnesses and conditions, so on top of all your qualities Clare, you have brought awareness of Spina Bifida to more people.

Best wishes to you and all the family, and keep sharing and taking those wonderful photos x
Stacey Churchill(non-registered)
The last time we met you were a teenager and we had a Terry chocolate orange lorry driver follow us into the services on the motorway when you and Hayli waved at him haha. You have such beautiful children now and life has thrown you a curve ball. But wow how you have coped and not only coped, but done an absolutely amazing job. Nobody knows what trials will come in the future but your baby girl has the love of solid family which is all anyone needs. ❤❤❤❤
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