The niggle.

It was around a month ago when that niggling worry started popping up in my head again.  Caitlin was becoming more sensitive to sounds again and was a bit grumpier than usual.  The thing is, it could be put down to a number of factors.  When she's tired she doesn't like any noise, when she's tired she's grumpy.  When she's got a bug she's the same, or when she's just having a bad day.  I always think when everything is going so well that something bad is going to happen because usually when things are going well, something knocks us off the happy track.  Usually it's the shunt.  Caitlin had her last revision in February but shunts don't seem to last long for her.  I hoped, prayed, thought positive thoughts that it couldn't be her shunt this time, especially not when we had her birthday trip to Disneyland Paris booked.  She just couldn't be that unlucky.  Turns out she could.

The niggling worry started increasing, taking over most of my thoughts the week before last.  Caitlin was really cranky when she woke up, didn't like the light and I was debating whether to take her to hospital.  She was still her happy, bubbly self most of the time and I try not to run down to the hospital at every possible sign of shunt malfunction, because anything can be a sign of shunt malfunction.  I don't like putting her through the inevitable blood tests and CT scan (particuarly when she's been exposed to way too much radiation already) unless I'm fairly sure something isn't right, that it's probably the shunt.  Caitlin's shunt just likes to be difficult and leaves subtle signs that it's not working as it should, leaving me in a panic as to what I should do. On the Tuesday of the week before last her bus escort mentioned Caitlin was limping in school.  That was when the niggle turned into loud alarm bells screaming...it's the shunt!! So I asked Caitlin to walk and sure enough she was dragging her left leg behind her.  I immediately started mentally planning 2-3 days in hospital, who would mind Aoife, could David take time off and then Caitlin suddenly stopped limping! Way to confuse me kiddo ;)  Still, I knew something was up so planned to take her in on the Thursday.  I was at university on the Wednesday and called Caitlin's physiotherapist to ask her to have a look at her leg just incase she had hurt it and that was prehaps what had caused the limping.  When she called me back to say there was no injury and she also felt her walking was regressing again I left uni, collected Caitlin from school and took her straight to A&E.  There she had the blood tests, was assessed, had the CT scan and was a complete trooper.  Usually Caitlin is terrified any time a doctor comes near her and she needs to be sedated for the CT scan but this time it was a total transformation.  She concentrated so hard at lying still and did exactly what the nurse asked.  The nurse couldn't believe how well she did for a 3 year old :)

Anyway, the doctor came back a while later, told us her CT scan was normal so he wasn't concerned about her shunt but the neurosurgeons were concerned that her Chiari Malformation was becoming symptomatic.  It was like a blow to the stomach.  Honestly, I'd be so concerned about the shunt that the Chiari didn't cross my mind.  Tethered cord did but Chiari - I was gobsmacked.  I guess we've had so many shunt problems I didn't think she would have chiari problems too.  They let us go home with a plan for the neurosurgeon to call us the following day.

I tossed and turned that night, decompression surgery or shunt surgery a possibility for my little girl, our trip to Disneyland didn't look likely.  The neurosurgeon called and told us to come in with a bag the following day and that we did, unsure of what was going to happen and when we would get home.  I hate the not knowing.  I live by life by lists, not knowing what's going on and everything being so up in the air leaves me very uneasy.  Mostly, I was so worried about Caitlin.  After a discussion with the neurosurgeon he changed his mind from chiari to shunt based on the fact that I explained the last time Caitlin's shunt blocked the CT was clear so it was still possible it was the shunt.  He agreed her symptoms were the same as last time so he wanted to explore the shunt.  I asked would we still be able to do our Disney trip for her 4th birthday and he said it wasn't possible.  I was gutted,  Of course her health is the number one priority but she so deserved this trip.  She's been watching YouTube videos of the park festivities for weeks and she was SO excited.  We had booked a birthday dinner for her with the Disney Princesses and she couldn't wait.  I was really looking forward to it too.  I couldn't talk for a while after the neurosurgeon left, I guess I was trying to digest everything.  David explained to Caitlin that Disneyland would have to wait and she turned to me and said, "It's okay Mummy, we can still go, it'll just be a different time."  Imagine that, my little girl consoling me!

Despite fasting for hours, more blood tests and another CT scan, Caitlin was still full of smiles and chat.  She has such a wonderful spirit does my girl :) Everything happened so quickly that day, at 10am we didn't know what was happening, by 2pm I was carrying her down for surgery.  She was so brave when they had the mask over her face, I talked to her, told her she was just like Brave the Princess and she smiled and blew bubbles into the mask until she drifted off.  I hate that part, handing your precious baby over for surgeons to do brain surgery is tough to say the least.  The waiting isn't much better!  Time ticks by so slowly.  Eventually 2 1/2 hours passed and they said we could see her.  She was groggy, sore, but still managed to try and give the thumbs up.

Not long till we got smiles though :)

Turned out they didn't even explore her shunt!  The neurosurgeon we spoke too had planned to insert a second shunt as we all agreed where it was now just wasn't working for her but he also planned to remove the "old" shunt at the same time.  He was over ruled by the head neurosurgeon who I'm guessing felt it was too traumatic and dangerous to insert a new shunt and remove an old one.  So we don't even know if it was the shunt causing the issues as they didn't check!  I do think it was though as Caitlin's walking has improved, she's happier, isn't complaining about light any more although trying to get her to eat is still an issue!  She struggled with the pain, it's probably been the worst pain she's had from all the shunt surgeries.  I'd do anything to take it from her.  I felt like the worst mum in the world when she cried for me to stop hurting her.  All I was trying to do was change her nappy but any movement had her in agony for 20 hours post op.  That was a long, hard 20 hours.  Then the neurosurgeon wrote her up for different pain relief and within an hour of taking that she thankfully started to improve. 

We took her down to see the christmas displays at the hospital, she was very pleased to see the reindeer, (Caitlin is obsessed with Rudolph at the moment!)

She also loved the plaster on her head, so much so that I only got it off her yesterday when the doctor said we could take it off 5 days ago lol.  She was very proud of herself when she climbed into the chair here and refused to let me sit on it, (this lovely green chair was my bed while Caitlin was in hospital!)

We were lucky this time, we were the only people on the side ward which has never happened before but it was very welcome!  Although it was still noisy at night it was nowhere near as bad as it usually is!  Caitlin amused herself with films, toys and I even managed to find some playdough on the ward,

Still, hospitals are draining.  And boring.  When the neurosurgeon came in Monday morning I was very keen to get home!  He agreed we could as long as Caitlin had another CT scan (her 3rd in a week!) and again she did fabulous.  When the nurse came in and said the neurosurgeon was happy with the CT scan and we could go home Caitlin wasn't waiting around....

Freedom!!

So we're home now.  We should be in Paris as I write this settling into our Disney hotel, ready to hit the parks tomorrow for Caitlin's birthday.  Instead, she's recovering from her 10th surgery, yup...we're into the double figures now.  These things can't be helped.  Of course it sucks, I'm gutted.  I'm also very grateful, we are very blessed to have Caitlin in our lives and I can't quite wrap my head around the fact she's four tomorrow!  I don't know what it is about 4, it just seems like she will lose the last bit of her babyness when she's a big 4 year old.  Even though we're not were we planned I still have a few surprises up my sleeve to hopefully give her the perfect day she deserves.  Happy Birthday to my beautiful princess.  Love you always and forever xoxo 

Thankful

Thanksgiving is a holiday that isn't celebrated in Ireland but lately I've been so thankful for the life I have.  The truth is 18 months ago I didn't know if either of my children would walk.  Caitlin was walking using her walker, but it was thought by the medical world that she would be unable to walk unassisted.  I was pregnant with her baby sister, not knowing if she would have spina bifida like her sister, and so it was a possibility neither of my girls would be able to walk.  Of course it wouldn't have been the end of the world if they didn't, but I don't think any mother if given the choice would choose for their baby to not have the ability to walk.  It was a scary time because it was uncertain and it makes it all that much more special for me to see my babies walking together now.  There was many times before I had Aoife where I imagined Caitlin having a sister or brother and seeing them walk around, chasing each other and laughing.  At that point it was unlikely Caitlin would walk and I didn't know if I could ever have another baby.  After Caitlin was diagnosed I learnt quickly not to take anything for granted.  It was naive for me to think it would be simple and straightforward to carry a baby and have a healthy child.  For us it was different.  Life taught me that hard lesson.

When I first found out I was pregnant we were over the moon.  We excitedly told family, the thought of miscarriage didn't cross my mind.  I carried that baby for 7 short weeks before I lost him or her.  I won't go into it too much because this blog is Caitlin's story and not mine, and it's not something I talk about much, but I will always remember.  Caitlin is my second baby, and that pregnancy I kept quiet until the 12 weeks scan, worried history would repeat itself.  After the 12 week scan I relaxed and spent 8 wonderful weeks enjoying my pregnancy, glad the hard part was over, that everything would be okay now.  At the 20 week scan I wasn't worried, and that was when we got the bombshell that our beautiful girl had spina bifida & hydrocephalus.  The remainder of my pregnancy was a horrible time because I thought at any moment I could lose her.  The sound of her cry when she was born is a sound I will treasure forever because she was here, she was alive and that was all that really mattered.

When Caitlin was two years old we started trying for another baby and again I quickly fell pregnant.  I convinced myself that my first miscarriage was the only one I would have, that it just couldn't happen again, we had had enough heartache. I carried my third baby for 7 weeks again before he or she became an angel.  Grief and a broken heart is hard to bear but my Caitlin was always my shining light, despite being in and out of hospital with shunt revisions, she was always smiling, and was always my reason to keep going.  A few months after my second miscarriage I learnt I was expecting again and this time I didn't dare hope.  Only David knew and we didn't really speak of it, afraid of losing this baby too.  I carried him or her for only 5 weeks this time and then she/he joined his brother's or sisters.  It's probably strange for some people for me to talk of a baby as if he/she was fully grown, when in reality they may never have had heart beats.  I never heard them.  But I cope by thinking they had souls from the moment of conception, that they are somewhere now, keeping a special watch on us.

At that point I give up on ever having another baby.  I was referred for hospital tests to investigate why I kept losing my babies, with my only surviving baby having disabilities.  On the day of the hospital tests I discovered I was pregnant once again.  My heart actually sunk, I was so sure I would lose this one too.  I informed the doctors at my appointment who give me a scan and found nothing.  They said it was either too early to tell but he wasn't hopeful I was going to carry this baby.  9 months later my healthy baby girl Aoife arrived.  My wish for Caitlin to be a big sister, for me to be a mummy again came true.

And so I am incredibly thankful.  Thankful to be a mother to my beautiful girls.  Watching them both grow, seeing both of them progress with Caitlin continuing to improve with her walking, and Aoife reaching all her milestones early, and walking at 10 months old, (that was a shock!).  

Just watching them playing together,

Being silly,

Fighting over toys,

Being cute little witches on Halloween,

Seeing the relationship between them both, watching Aoife copy everything her sister does, and how Caitlin loves teaching her new things (and takes credit for whatever she doesn't teach her!)  I just love it.  Time passes in a blink of an eye.  Aoife is already a year old, Caitlin almost four.  Those dark days are long gone.  There couldn't be any when I have my girls.  The innocence of children is amazing and us adults could learn a lot from them!  Like when Caitlin got her new wheelchair, instead of being sad about it she was so excited she demanded we go out in the street right away so she could try it out properly.  Aoife loves it too and is always trying to climb up into it.  It's a great way to be, to see aids like wheelchairs as just a completely normal part of life.  

  

When Caitlin goes to school, Aoife wanders around the house looking for her, and runs straight to Caitlin when she arrives home.  If Caitlin comes home from nursery and Aoife is taking a nap her first question is to ask where she is.  They chase each other around the house all the time, laughing.  I watch with a stupid big grin on my face then join in :)  They are the best of friends already.  I couldn't ask for more.

I guess my point is, always have hope.  Dreams come true.  Miracles happen every day.  My beautiful daughters are proof of that.  For that, I will always be thankful.

Summer 2013 :)

How has the summer passed so quickly?!?! To think I was worrying about how I was going to keep the two girls entertained for two months.  This summer has been nothing short of fabulous.  Best summer yet without a doubt.  It's not like we did anything extravagant - just lots of family time.  Making memories :)  I haven't had a chance to blog about anything we've did this summer as we have just been so busy, but I'll try to quickly cover most things now :)
We took the opportunity of David being at home during the day to go swimming every week.  Aside from animals, it's Caitlin's favourite thing to do :) Aoife is exactly the same, as soon as she sees the water she tries to jump into my arms and into the pool!  Both of them just laugh, splash, chase each other (with Mummy & Daddy's help) and just have a ton of fun!

We went to W5, it's like an interactive centre encouraging children to use their imagination.  Caitlin loves pretending to be a shop keeper there, playing in the water, boat and car, dancing and Aoife just enjoys having a wide open space to crawl around.  Oh yes, she's crawling now, as well as pulling to stand, cruising along the sofa and walking a little with her push along walker!  It's crazy, she's just ten months old today, she just seems far too little to be doing these things.  Caitlin was much older when she reached these milestones, obviously due to her spina bifida so that's probably why I find it so weird!

The zoo was an obvious hit with both the girls....

Well maybe more Caitlin, Aoife did this most of the time there..

The aquarium was a big hit....

There was a few weeks spent in Donegal which involves lots of time in Little Rockers which is the indoor play area within the holiday park, Caitlin must have had her face painted about 20 times while we were there :)

The play park & games arcade,

The beach....

The farm....

And tropical world were Caitlin made friends with a snake!

We also went every week (apart from when we were in Donegal) to the Donkey Sanctuary.  I can't emphasis enough how amazing this place is.  Its a centre run by a charity, that gives donkey rides to children with disabilities.  Not only that, but it has a outdoor play area, an indoor play area with painting, crafts and toys plus a sensory room.  Caitlin's favourite part is the donkeys, Aoife's is the sensory room with all the lights and music, though both girls just have a blast from the minute they arrived and usually we need to carry Caitlin out because she won't leave lol.  Not only is the donkeys a brilliant experience for Caitlin but physiotherapy in disguise :)   And for the past few weeks, Aoife has been able to have a turn on the donkeys too!

Caitlin got her first wheelchair!  That should really be a post on it's own but I'm cramming here :) It's only on loan until she gets one that is really hers.  She was so excited when she seen it and asked to go outside as soon as we got home to take it for a spin :)

We only use it for days where we need to walk for long periods like to the zoo, Caitlin loves how she can move it around herself :)

Oh and I have a few more Take That Spina Bifida Moments!

Like when Caitlin walked on sand at the beach....

And then on stones!!

When Caitlin started walking independently we were informed she would only ever walk on flat, smooth surfaces.  Sand and stones ain't flat or smooth!  Another example of doctor's not knowing everything :)

I'm sure there's much more to post about but as always, not enough time in the day!  I really can't believe I have just waved my daughter off this morning as she got on the school bus excited and smiling, showing off her new school bag and lunchbox, ready to start her second year at nursery school.  She's been gone 20 minutes and I miss her!  The house is so quiet when she's not here, but I know my little social butterfly will love being back at school with her friends.  This will probably be her last year at Fleming Fulton and I have to start the process of looking into mainstream schools for next year.  This week we have an appointment at spina bifida clinic, there is just a couple of things I need to discuss with them regarding her bowels & bladder but apart from those few issues she really is doing fantastic and we have had a wonderful summer!

Diagnosis VS Reality

I've been thinking a lot recently about the huge difference between diagnosis and reality.  The diagnosis that your child is going to be severely disabled is a stark constrast to what the reality of the diagnosis means.

It was almost four years ago now since the the worst day of my life.  The day of diagnosis.  I think what hurt the most was that day I lost the baby I thought I was having.  When your pregnant, mums to be day dream of having a healthy, beautiful baby boy or girl.  Bringing them home and watching them learn to smile, sit up, crawl, walk and talk.  We day dream about a little girl skipping down the street with their friends, or a little boy kicking a ball around.  I was no different and had the same dreams.  When we were told at the scan of the news that our baby had spina bifida, in that split second those dreams were shattered.  I remember the pain well, that moment when it feels like your heart drops to the pit of your stomach.  The feeling of complete shock and then when the doctor told us our baby also had too much fluid around her brain  - the pain that I felt when I heard those words.  The shock turned to tears, being unable to stop, unable to catch my breath.  I remember half walking, half being helped by David and the midwife out the back doors of the building because I was crying so much the midwife knew I couldn't walk back through a waiting room full of other expecting mums to be. The state I was in probably would have left them panicking.  When we arrived home I read and re-read the short report the doctor had wrote.  Beside the cerebellum she had wrote - Absent?  The thought that she might not have such an important part of her brain was just devastating.  The next few days passed in a blur of grief, worry, shock and despair.   A few days later a letter came for a detailed invesitgation of our baby at the Fetal Medicine Unit.  From that scan we learnt we were having a girl and the report stated,
Prenatal diagnosis - Abnormal structures,
Head: Lemon shaped head.
Brain: Ventricuolomegaly.  Banana shaped cerebellum.
Spine:  Lumbo - sacral spina bifida myelomeningocele.  Arnold Chiari Malformation.

If you ask anybody who has had a child with spina bifida they will tell you don't google these terms as you will only scare yourself.  I googled.  They were right to say that!

Google tells me,

Lemon shaped head - Sign that spina bifida is present.  Google gives me links to stories of babies with the diagnosis.  One I read was about a mother who's baby was diagnosed and she couldn't let "a innocent baby into the world with so many problems" so she aborted her.  She talks about how much she loves her.  When I read things like that pregnant with Caitlin I couldn't wrap my head around it.  If you love your baby, why kill them?  She states, "Why did we have to play God?" Um, no you didn't have to play God.  You could have left this child in God's hand's and God would have chosen her fate.  That's the way I seen it, if my baby girl wasn't supposed to live then she would pass away, my choice was that if this was her fate, I was going to treasure every moment I did have with her, no matter how short that time was.  I was prepared to do everything in my power to show her what it means to be loved - and that was by being a mother to her, by giving her a chance to live.

Brain - Ventricuolomegaly - caused by brain destruction and morphological maldevelopment.  Fetal ventriculomegaly is frequently associated with other severe developmental abnormalities, and this combination presents a uniformly dismal outcome. The consultant told me ventriculomegaly and hydrocephalus are basically the same thing.  I read that hydrocephalus was classed as severe when the brain ventricles were over 15mm.  The more the ventricles dilated with fluid, the more her brain would be compressed and damaged.  Caitlin's ventricles were over 30mm before she was born.  I thought it was a certainty she would have brain damage.  How could she not with so much fluid around her brain?

Arnold Chiari Malformation / Banana shaped cerebellum - Another sign of spina bifida.  The cerebellum & brain stem is being pulled downwards.  The cerebellum plays an important role in motor function, it is involved in some cognitive functions such as attention and language.  I was so thankful they were able to detect her cerebellum but it wasn't how it should be.  I thought if the cerebellum is being pulled down, she would be further brain damaged.

Spine - Lumbo-sacral myelomeningocele - Myelomeningocele is the most complex and severe form of spina bifida.  There will be some permanent degree of leg paralysis and bowel and bladder difficulties.  We were told Caitlin would be unable to walk, and would use a wheelchair to get around.

So there you have it.  The prognosis we had for Caitlin wasn't good.  I am a member of spina bifida forums from all over the world and when children are diagnosed with these conditions the prognosis from the diagnosis is actually often worse than what we were told.  Googling certainly doesn't help.  All the diagnosis listed on that report painted a bleak future for Caitlin, a future full of surgery, therapy and difficulty. A life worth living?  Unfortunately most don't think so.  In the UK, research has shown somewhere between 70-90% of babies diagnosed with spina bifida prenatally are aborted.  In some countries babies with spina bifida can be aborted a week or two before they are full term.  News reports have shown that lethal injections are still being given to new born babies with spina bifida and hydrocephalus.   It breaks my heart.  It's just inhumane and so wrong.   The doctors give the worst case scenario because they have to cover every possibility with the parents but usually leave out the part that the worst case scenario doesn't usually happen.  Obstetricians are usually the ones to give the diagnosis to parent's, which shouldn't happen.  They give inaccurate information, they don't treat children with spina bifida, they actually know very little about it.  Parents who receive a diagnosis need to speak with a consultant who treats children with spina bifida.  Professionals who actually know what they're talking about with regards to SB and hydrocephalus.  It's so sad that the majority of parents don't speak with a consultant specialising in treating children with spina bifida but instead take the word of a professional that knows little to nothing about the condition and choose to abort their baby.  Another reason that doctors encourage termination is money.  In the UK, the health service is free to all.  A child with spina bifida and hydrocephalus will incur huge costs to the NHS through surgeries, therapy etc.  They know theres a budget and need to keep the rates of babies born with SB & hydro down which encourages them to recommend termination to parents.  I've heard of parents being told their marriage will break up under the strain of having a disabled child, that siblings will suffer, that their child with the disability will have no quality of life.  To me, it's cruel and wrong for this kind of practise from professionals.  Nobody can predict the future.  Those giving the diagnosis need to be educated and trained to provide useful, accurate information, to direct parents to support groups, to give parent's all the information that will lead to an informed decision.  I understand parents are terrified, they truly believe their child will have a life of suffering and pain, that they will never be independent. I've been there, thought the same things.  For me though, I knew that my role was to be her mummy, to support her, advocate for her and make her life as special as it could be.  She was still alive and I truly do believe were there is life, there is hope.

"Being disabled should not mean being disqualified from having access to every aspect of life." 

-- Emma Thompson

                     (Caitlin's 12 week scan showing her perfectly formed tiny hand)

I can't stress enough how different reality is to what we thought it would be.  Yes, Caitlin has had to have many surgeries, 1 spinal surgery at two days old and 8 brain surgeries over the next 3 years.  That's actually more surgery than many children with spina bifida.  Many children have their spinal surgery and a shunt fitted and don't require any more surgery for many years.  Some don't even need a shunt fitted, even if they do have hydrocephalus.  Caitlin may have had 9 surgeries, but even then she's only spent around a 4/5 weeks in hospital over a 3 1/2 year period.  It is hard but she's spent so much more time out of hospital, at home, just being a baby, growing into a chatty toddler, to an even chattier 3 year old :)  The doctors don't give you a vital piece of information when you recieve all these diagnosis.  They don't tell you of the love you will have for your baby when he or she is born.  That love has carried me through all the tests, therapy and surgery and always will.  The love you will have for your child, its immeasureable, it overpowers all other feelings.  Although the worry and the stress can surface at times, the love I have for her keeps me strong for her.

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” – Christopher Reeves


Caitlin is now 3 1/2 years old.  The reality is she has spina bifida.  It is just a small part of her.  She walks with AFO's (ankle braces).  She ditched using a walker full time a few months ago, - she rarely uses it anymore.  Yes, her legs get tired after walking short distances so she will get a wheelchair soon to use for long distances.  That used to scare me, but it doesn't really bother me anymore - it'll just give her the option to be even more independent.

"Every child is gifted.  They just unwrap their packages at different times." - Unknown 

The reality of hydrocephalus - Caitlin has had a lot of issues with shunts.  They keep blocking and surgery is required to fix it.  The 8 brain surgeries she has had were all shunt surgeries.  Yes it's difficult, but it really is remarkable how quickly she recovers.  She has surgery and is home two days later.  Anybody who didn't know she had the surgery would never guess as she is back to her happy, bubbly self as soon as she's home.  Brain damage is what scared me most.  Caitlin is so smart.  The imagination she has is just extraordinary :) I know, I'm bragging but this is the reality.  Hydrocephalus has not affected her speech or learning so far in her life.  She has scored average and above average in all of her developmental tests.

The reality of Arnold Chiari Malformation -She doesn't have any symptoms from it whatsoever.

Neuropathic bowel and bladder due to her spina bifida - We use catheters and are about to start a bowel washout to try to get her out of nappies.  Finding out your child is doubly incontinent is heart breaking at first but I soon realised this could be managed.  With routine, patience, and trying out different methods she will eventually wear pants like everybody else.  She might need to wear a pad in her pants to catch leaks, but that's certainly not the end of the world!

Caitlin also had an MRI of her spine at 7 months.  The report stated as well as everything listed above her spinal cord was taut and stretched towards the defect consistent with tethered cord.  Extensive syringomyelia was noted involving cervical and thoracic portions of the cords.  Dilatation of the temporal horns of both lateral ventricles.  A right - sided hydronephrosis was also noted as well as spinal dysraphism.  You would think I would have learnt my lesson after the last time we got a diagnosis but nope, I went straight to google.  Again!  

Googling told me that, tethered cord & spinal dysraphism are the same.  Tethered cord is when the cord is stretched and can cause further damage to the spinal cord.
Syringomyelia - Cysts in the spinal cord.  They can expand over time, destroying the spinal cord.  Caitlin had extensive cysts in cervical and thoracic portions of the cord which is at the top of the spinal cord.  The fact that they were at the top of the spine was the most devastating part.  I thought if these cysts destroyed that part of the spinal cord she could end up paralysed from the neck downwards.
Dilatation of the temporal horns - Her ventricles were filled with fluid.  I thought this meant her shunt was broken again, she had already had two revisions at this point.
A right sided hydroenphrosis - Her kidney is under pressure.

I was a wreck once again, looking at my baby girl, thinking she was facing major risky surgery to remove the cysts, more shunt surgery.  Then I spoke with her neurosurgeon who was unconcerned!  He said this was all very normal with children with spina bifida, she wasn't showing symptoms and therefore surgery was not necessary.  Two and a half years have passed from that point and no spinal surgery has been needed.  The right sided hydroenphrosis was only present because I hadnt done her catheter as she was sedated for the MRI.  So this being on the report just meant we have to do her catheter so her kidney isn't under pressure.  My point is, don't google!!  I should really listen to my own advice ;) 
Things can seem really bad, when in reality, it's not.  If and when she does need surgery in the future we will deal with it, we will cope and she will come through it and get on with living her life.  I will advocate for her, fight for her and get her what she needs because she's my baby and I'm her mummy.

"A mother's love for her child is like nothing else in the world. It know no law, no pity, it dares all things and crushes down remorse-lessly all that stands in its path." - Unknown

The fact that Caitlin is doing so well despite the prognosis is not unusual for a child with spina bifida.  Even when a child does have severe complications from having spina bifida, (and this is rare) they smile, they love, they are loved and they have a quality of life.  Mostly, children with spina bifida, hydrocephalus and Arnold Chiari Malformation lead happy, fulfilling lives.  They will probably need mobility aids, prehaps a wheelchair and will usually need some assistance with achieving social continence but that is just a small part of their life.  My daughter has surpassed all of the doctors and even my expectations and is full of life.  

She makes me laugh several times every day, she's the funniest, sweetest, lively little girl who will normally be found pretending to be either a gruffalo, a mermaid, little red riding hood, a shark, a lion from the lion king and now and again she's just Caitlin :)  A little girl who is a wonderful big sister.  

Caitlin loves animals, playing, singing and dancing.  I know of hundreds of families around the world from the support forums and I have never heard of a single one who has regretted having their baby, and I have lost count of the amount of times I have read of a child proving the doctors wrong.  Caitlin is amongst them.

"A mother thinks about her children day and night. Even if they are not with her, and will love them in a way they will never understand" - Unknown

I don't have the words to say how grateful I am that I have Caitlin.  She injects fun and laughter into our lives.  Our sunshine.  She is a loveable, beautiful 3 year old and I'm back to my daydreaming about when she starts primary school, imagining what she'll look like as she grows, what she'll choose as a career when she's an adult.  Right now, I think she'll work with animals or be an actress ;)  I know she'll have her dreams like we all do, and she'll achieve them.  We wouldn't have the sparkle in our lives if we didn't have our Caitlin.

 The very first time I realized what unconditional love meant ; was the very first time I held each one of my children in my arms. It was love at first sight. - Unknown

"People wait a life time to meet their hero...I give birth to mine."