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."