You never know what's round the corner.

It's hard to believe that just two days after Caitlin's first birthday party she was in theatre because her shunt had blocked again.  It all happened so quickly.  In the early hours of Monday morning, I woke up to her screaming and that's not like Caitlin, she never wakes up really upset.  Like most sb mummies, the first thing I did was check her fonatelle which is the soft spot in a babies head, and it should be soft and sunken but her's was risen and hard.  That is always an indicator for Caitlin that her shunt is blocked, but this had happened a few months previously and she had been okay, it had went away after a few weeks so we weren't sure what to do.  I give her a bottle and she settled straight away and fell back to so sleep easily so I reluctantly went back to bed, and decided I'd see how she was in the morning.
When she woke up she was fine, back to her usual happy self but her fonatelle was still risen and felt less hard but not soft.  It's a tough call to decide what to do, i'm always told to bring her down to hospital to be on the safe side, which is the best thing to do but I'm always a bit reluctant when she is so well because I know that when I take her to the hospital they will put her through scans and blood tests sometimes unnecessarily and I hate seeing her so upset when they do that.
But I knew I would just worry all day if I didn't so I bought her down and they decided on a shunt series but not before they tried to take her blood.  Now taking blood from Caitlin is no easy task.  Usually it takes at least 3 medical staff and several attempts before they can get anything from her.  They always try her arms and legs first and I always tell them it won't work but they try anyway and they are always unsuccessful.  This time was no different.  After sticking needles into her arms and legs Caitlin was inconsolable and as they held her down and put a needle in her head to try to get some blood, I tried to keep it together but she was screaming for me and putting her arms out for me to help her and I just burst into tears.  I know that doesn't help but I just couldn't watch it any longer and had to stand at the other side of the room.  It really traumatised Caitlin and after that any time a nurse came near her she would cling to me and cry.  Here is a pic of my brave girl, with her head all bandaged up, after them taking the blood from her head and putting a line in.

My poor baby was so exhausted after all of that but just as she was drifting off to sleep they sent us down for scans, she had x-rays taken and a ct scan and when we got back, the staff give us a room with a cot so that she could sleep but of course as soon as she drifted off the neurosurgeon turned up to assess her and told me he would need to wake her.  Doctors and nurses tend to have a habit of doing that.  I know they don't mean too but every time Caitlin finally fell asleep one would come in to either take blood pressure or her temperature or to assess her.  Before we went home two days later, Caitlin had been woken twice just as she drifted off, and on the third time she had fell asleep a neurosurgeon came in and I said to him she had just fallen asleep and he laughed and said well she won't be sleeping now.  I was ready for whacking him lol.

Anyway, I'm getting off the point of what happened next.  The neurosurgeon explained her ventricles had increased slightly from her last ct scan but that could be down to the fact she is bigger now, and so he felt the shunt tubing in her neck and frowned, explaining to us that he wasn't happy with the flow and that he would like to take her to theatre to investigate.  He then rang Caitlin's neurosurgeon who didn't want her to have more surgery and insisted that a shunt tap be done first.  He done this and to be honest I don't really know what it involved because I couldn't look, I just cuddled Caitlin while he did it and he said this confirmed that something was up because there was hardly any fluid coming out.  So that was that, Caitlin was now fasting, and surgery was scheduled for that evening.  Now, trying to entertain a tired, hungry and thirsty baby all day is not fun! Luckily, my mum was with us so we kept Caitlin happy by letting her watch cartoons and playing peek-a-boo behind the hospital curtains.  Caitlin's dad showed up after work and shortly after that the neurosurgeon came round to explain the risks with the surgery.  He said as with any brain surgery, there is a risk of internal bleeding, infection, seizures and worse.  We knew all this, this was our fourth shunt operation but hearing it over and over again doesn't make it any easier.

As we waited, another mum from the ward came over and told us her son was celebrating his 7th birthday and we were welcome to have some birthday cake.  She was a lovely woman and I remember thinking how crap it must be to celebrate your 7th birthday in hospital but the little boy seemed really happy and upbeat.  When we were walking down to theatre with the surgical team the mum and her son were walking along the corridor too and we got talking.  The mum explained to her son that these people (the surgical team) would be helping him tomorrow when he had his operation and to not be afraid as they were there to help.  The little boy looked a bit nervous of them but he was happy to talk to them and to us.  He was a very polite and friendly child and thanked me when I wished him a Happy Birthday.  His face lit up when the surgical team told him they had a Wii down in theatre and he could play it before his operation. He was delighted and told them he had really missed his Wii since he had come to hospital.  His mum wished us well as we went on into theatre and I give my daughter a big kiss and told her I'd see her soon before her Dad took her up to be put to sleep.  I have always been the one to bring her up to be put to sleep so I thought he could have a go this time! He told me after she was clapping her hands for the surgical staff and playing with their medical masks.  That's my girl for you, always wanting to show off!
As she was having her surgery, we waited and waited anxiously.  She was only gone for an hour and a half but it just feels like an eternity.  The relief I feel each time they tell me I can see her in recovery is just indescribable.  On our way up to see her we bumped into the neurosurgeon who explained the top end of her shunt was blocked and she needed her Mummy and Daddy as she was very grumpy.  Sure enough when we went in, even though she was sore and groggy, she stopped crying when I held her, but if any of the nurses dared to come near her she was cry again.
Here is a pic of the scar, were they opened her up to fix her shunt.

Everytime her hair starts to grow back her shunt blocks and she gets it shaved off again, But the surgeon did a good job with the stitches and only shaved off what he needed too.  It's a small price to pay to control the hydrocephalus but it's still hard to see.  That night was like any night in the hospital.  Alot of noise, and not alot of sleep.  I go crazy in those places but it's the best place for Caitlin to be, even though she hates being there too!

In the morning she was already nearly back to her old self.  She was very clingy but she was really happy when we took her to the playroom and she got her pick of loads of toys.  Her favourite was the car.

Back to her cheeky self....

When we went back to her room I smiled over to the little boy who had celebrated his 7th birthday the day before.  I'd seen the surgeon come in and talk to him a little while before so I knew he would be going to theatre soon.  His dad had cuddled him most of the night and his mum was giving him hugs from everybody who had sent them and he smiled at each one.  I watched as the surgical team arrived and his mum walked him out of the ward, hugging him tightly, and I wished them luck and she smiled gratefully.  I watched as his Dad looked at his wife and son with tears in his eyes, and I got a lump in my throat.  I watched as they walked down the corridor together and I said a prayer for that little boy who was in his way to theatre.  I cuddled Caitlin and hoped that the surgeons would be able to remove all of his brain tumour and that he would make a full recovery.  It was obvious that this family were good people and I wondered, why do these terrible things happen to good people?  These children don't deserve what they have to go through and I always think to myself, Caitlin has been through so much, after this operation she has to be okay for at least a few years, it's just not fair for this to keep happening.  But it does keep happening.  Some children with spina bifida have recurrant UTI's (urinary tract infections), some get lots of fractures, and my Caitlin seems to have a lot of shunt malfunctions.  I guess it's just the way it is.  I just wish it wasn't the way it was.

Having said that, Caitlin copes so brilliantly and bounces back in no time.  I had to take a picture when we first got back home, and as you can see she was glad to be home again!

Seeing that family have to go through watching their son battle an aggressive brain tumour puts things into perspective.  I just have to enjoy when Caitlin is well and if I have her home with me this Christmas, I can honestly say I will be the happiest girl in the world.  I have to appreciate every moment that I have with her.

 Because you just never know what's round the corner.

Caitlin's 1st birthday

What a year! A few days ago on Thursday the 9th of December my gorgeous girl turned 1.  What a difference a year makes.  This time last year we were all so worried about Caitlin who was recovering from her operation to close her back in hospital and being monitored closely to check for signs of her hydrocephalus increasing.  Instead of being at home enjoying our first few days of getting to know our daughter, we were by her beside constantly, daydreaming about the day we could take her home.  Now, that horrible time seems so long ago.  I've watched her grow into a beautiful, determined, cheeky little character. 

We started her birthday by opening her presents and she enjoyed playing with each of them but they were all forgotten about when we opened her last present, her very own first trike.  We put her in it and as you can see she just loved it!

After tiring herself out playing with her toys she went for a quick nap then we went to see Santa.  Unfortunately Caitlin does not like Santa and as soon as we sat her on his knee she started crying.  So to cheer her up we put her on a little ride in the shopping centre and she cheered up in no time.  In the afternoon we went swimming and as always, Caitlin had so much fun.  She really wants to be up on her feet and in the water she can run around the pool with me holding on to her and she really enjoyed splashing water all over her Daddy, she laughed and laughed until we had to leave. 
But the fun wasn't over yet! Next up we took her round to the soft play area and we were the only ones in the Toddler bit so we had it all to ourselves.  Of all the slides and tunnels there was, Caitlin was fasincated by the green netting that surrounds the play area and wanted to spend ages touching it and pulling it.  Before we left me, Caitlin's Daddy and Caitlin jumped into the ball pool and we played there for ages, Caitlin really enjoyed it and so did we!

Her birthday wouldn't have been complete without a visit to her Grandparent's so after soft play we headed to my mum and dad's. There was more presents waiting for her, and before we went we took a pic, here she is with Granny and Grandad.

Next up was her Nanny, Papa and Uncle Marks house were she got her very first birthday cake, which as you can see she couldn't wait to get her hands on!

After getting more presents we put her in her pjs because we knew after that busy day she would probably fall asleep in the car on the way home.  Sure enough, she was asleep within minutes of leaving.  

Two days later on Saturday we thought we would celebrate her birthday with everybody who didn't get to see her on her actual birthday so we had a little tea party.  Mind you, it didn't turn out to be little.  The house was filled with all of our family and friends and we all had a great time celebrating my little princess's first birthday.  

Here are some of Caitlin's cousins playing in the playpen, 

And with her big cousins, Anna and Lauren,

When everybody gathered so they could sing Happy Birthday to her and she could see her cake, Caitlin was grinning from ear to ear, she loves being the centre of attention and is loved by so many people.  She is our whole world and I'm so glad and happy she got to celebrate her birthday at home with her family.  With everything she has been through, it made her first birthday extra special. 

Halloween, TV, and MRI results.

It's been a busy week!  On Sunday my little Caitlin transformed into none other than Minnie Mouse for her first Halloween and she loved it.  I had to laugh at her when we first put her in her costume, we showed her herself in it infront of the mirror and she admired herself for ages.  When her Dad stood infront of her she pushed him out of the way so she could look at herself lol.  I wasn't sure if she would keep her Minnie Mouse ears on but she did and she looked lovely.

We took her to visit her big cousin Ainle who was Robin for the night.  As you can see, she adores him and loves to play with him.

 
We then went on over to my mum and dad's who put on a firework show especially for their one and only grandchild but Caitlin was a little bit afraid of the big noises so we took her inside and let her watch from the window.  She was fascinated by the colours and really enjoyed it from the safety of the living room!  Afterwards she went straight to bed as she was absolutely shattered and we had a big day ahead of us the next morning as Caitlin had been asked to appear in a feature for TinyLife to promote the calender as she is the cover star!

She was so cute in her little dress but I forgot to take pictures so you will all have to tune in to UTV on Thursday at 7.30pm to see her! She was a natural in front of the camera and had everybody cooing over her as she smiled and posed.  By the time I was interviewed she was exhausted and spent the filming of it rubbing her eyes but she did a great job.  I can't wait to see her on it, but I'm dreading seeing myself!

Today was a big day too.  A day I had been dreading.  Today we went to the spina bifida clinic to discuss Caitlin's progress and MRI results.  I wasn't worried about her progress.  I can see she's doing great and I have no concerns with her development.  But I was really nervous about all these different things she had been diagnosed with, that I discussed in my last post and what it meant for her.  When we got called into her urologist office we sat down and Mr Bailie was talking with another doctor and Caitlin was not happy that she wasn't getting their full attention so she started clapping and clapped louder and louder glaring at them until they looked at her.  She's such a funny little character.  When she wants something, she'll stop at nothing to get it!
Anywho, Mr Bailie was really pleased with her and had no concerns, he referred us for a couple of scans but we've got used to that now, as he said it's not because anything's wrong, it's just what comes with spina bifida.
Mr Mc Connell, Caitlin's neurosurgeon seen us next and he hadn't even seen her report yet.  He read it and went through a few things with us and concluded that right now she doesn't need an operation! YAY!!  I was elated.  According to him, everything that was on the report is really common with spina bifida and as she isn't showing any loss of function then he doesn't think anything needs done.  The only negative was that the report had said no Chiari Malformation was present but he said he could clearly see on the pictures of the scan that it was present.  But less than 1 in 4 children with the malformation ever need any treatment so hopefully Caitlin won't.  It's a hard thing to accept that with having a child with spina bifida it's not about if they will ever need surgery, it's more a question of when.  Right now though, Caitlin doesn't need any surgery so I'm not going to worry about when she might need it and instead enjoy watching her grow and enjoy all the fun we have together.

Like our day out to Lough Negh,

Or reading a story with Daddy,

Or catching her on the laptop when I left her to play with her toys!

I would just like to finish by saying a big thank you for all your support for the appointment today :-)

Ups and Downs....

I think I mentioned before that Caitlin got an MRI scan done in July to check for tethered cord.  I honestly wasn't worried about it because she wasn't losing any function but I began to feel a little uneasy as the weeks turned into months and we hadn't heard anything, despite several phone calls I made to the hospital.  Eventually, a couple of weeks back, Caitlin's urologist's secretary rang and said the results had been looked at and Mr Bailie wanted to change her appointment from December to November and to make sure her neurosurgeon was there.  Naturally, I went into panic mode.  I mean, if there was nothing wrong why would he move the appointment forward and want Caitlin's neurosurgeon there.  I thought that if her neuro was there it meant surgery was needed.  I ended up ringing the secretary back and telling her I needed a copy of the report because I was going out of my mind worrying about what had been found.  Two days later I arrived home to find the letter lying in the hall.  I ripped it open and scanned through it quickly, while Caitlin was busy trying to take the letter off me.  I skipped to the conclusion which said she had spinal dysraphism, tethered cord, dermal sinus tract and extensive syringomelia.  I was so shocked that all this had been found.  I knew a tiny bit about tethered cord but the rest may as well have been in Chinese, I'd never heard of any of it.  I set Caitlin down in her playpen and went straight on Google trying to find out what I could and what I read terrified me.  Syringomelia can destroy the spinal cord.  The rest of the words that she had been diagnosed with I couldn't even find out anything about them.  All I could think of was she was going to need surgery and as some of the syringomelia is at the top of her back, if the surgeon nicked the wrong nerve, she could end up paralysed from the chest down.  I have to admit I thought to myself, why my baby, she has been through so much already, why can't she just enjoy being a baby for a while.
Luckily, my friends from Spina Bifida Connection and the Spina Bifida parenting group on Facebook told me they had been in similar situations and their children hadn't needed surgery.  So I'm hoping and praying that Caitlin won't need more surgery any time soon.  Our appointment to discuss the MRI results is next Tuesday and I have already started to write out my list of questions.  Caitlin's doctors must hate it when they see me coming, I ask them everything under the sun!  I'm hoping they have some good news for us but I'm getting more nervous about it as the appointment gets closer.    

We also finally started the indwelling catheter.  It took nearly a week to get the supplies, I got the wrong stuff sent out so many times, I was going mad!  When we eventually got everything and did it, it all went fine, until the next day when I was catheterizing her as normal and blood came out.  I freaked out, thinking I had damaged her with the indwelling catheter and rang her nurse who said that shouldn't be happening (that helped  calm me down) and that I should ring her continence nurse who of course wasn't in.  She rang back a few hours later and told me it was quite normal as long as there wasn't much blood, which there wasn't, and that it was probably because it was a new thing that was in her bladder for so long, and that it should settle down.  Thankfully, there's been no blood since and I needn't have worried about Caitlin hating it, she thinks its a toy!

We also went to Dublin for the weekend to visit our family down there, and Caitlin had lots of fun staying with her Godmother Trisha, and getting fussed over by her big cousins.

We're really looking forward to Caitlin's first Halloween and I will post some pics of Caitlin in her costume as soon as I can.

Catheter's and funderland!

We got a call from Caitlin's urologist last week who was not at all happy with me for not taking his advice to use an indwelling catheter for Caitlin each night.  An indwelling catheter is basically a catheter inserted into the bladder and a bag is attached to it so that when pee goes into her bladder it is drained into the bag.  Her urodynamics test had shown that there was high pressures within her bladder and Mr Bailie wanted me to use an indwelling catheter to help reduce these pressures.  I didn't want to for many reasons, the high risk of infection that comes with it was the main reason and I knew it would be uncomfortable for her, and I was afraid that keeping her bladder open all night would cause her to leak constantly.  I wanted to use a drug called Ditropan, that is known to reduce pressures in the bladder but Mr. Bailie advised me against this as there are some alarming side effects that may come with this drug.  So after we discussed the pros and cons of both methods, I have decided to use an indwelling catheter.  It was a really tough decision to make.  We have the community nurse coming out on Tuesday to show me how to do it and i'm not looking forward to it.  I'm afraid Caitlin wont tolerate it and not be able to sleep with it as it might be really uncomfortable for her.  I just hate that she has to have these things done to her and I make the decision to do it.  But the truth is, it will prevent damage to her kidneys and that is more important.  Her MRI showed that when her bladder is full her kidney is put under pressure so using the indwelling catheter during the night will help her.

On a better note, Caitlin turned ten months today! Her new favourite thing is to clap her hands, it's so cute.  We decided to take her to Funderland today which for those who don't leave nearby is a big funfair that comes to Belfast every year.

This is us on the Carousel which she loved!

Then on the Baby Waltzer, which she really enjoyed, but there was moments like this were she was like what the hell is going on here!

Next was the baby Ladybirds and Caitlin hung onto the handlebars the whole time like a good girl and had plenty of smiles for Mummy each time she went past :)

Me and my gorgeous girl

The big wheel was her absolute favourite, she laughed the whole time and cried when we had to take her off!

Finally, just before we left we walked past this rather scary looking man, but Caitlin seemed rather pleased to meet him!

It really was a fun day out to the fair :-)

Living with Spina Bifida

I have lost count of the number of times Caitlin has needed to have blood taken, or the amount of times shes needed to be sedated or the amount of CT scans she has had.  She's had an MRI, Urodynamics, ultrasounds, and we have had to learn to catheterize her four times every day.  I do physiotherapy every day with her, and give her her medicine 3 times every day.  We have regular appointments for different things and sometimes it can seem overwhelming.

I didn't know what to expect when I found out my baby had spina bifida and I have learnt so much.
Sure, Caitlin has some extra issues that we need to deal with it but spina bifida is a small part of her - it doesn't define who she is.  It hasn't held her back when she learned to hold her head up, when she learned to roll, and when she learned to sit up.  She is a beautiful, smart, funny and happy little girl who loves to play peekaboo or get pushed on her swing or wave at herself in the mirror.  She loves to play, to try to copy what your doing or saying and she loves days out and splashing in the water.  She loves to have a giggle with Daddy and a cuddle with Mummy.
As another sb mummy once said, when you have a child with a disability, the lows are really low, but the highs...well they are the highest :-)
My little girl makes me so proud and happy each and every day and the best thing that has ever happened to me is that I got to be her mummy.

                                                          

Hospital

When Caitlin was 2 days old she had her first surgery to close her back which went well.  I was discharged the next day and spend every spare minute with her in the Children's Hospital.  I couldn't wait to get us home and the surgeons were hopeful that she wouldn't need a shunt as her hydrocephalus was stable.  After 5days we got the good news that she was doing so great we could go home the following day!
That morning I arrived at the hospital fully expecting to get her home and as soon as I arrived I heard her crying really loudly.  She had developed an infection and was very sick.  She was sore and had a fever and needed to be put on a drip.  Then her hydrocephalus started to increase.  As soon as her infection started to go, plans were made to insert a shunt.  We had hoped that we would get her home for Christmas but on Christmas Eve Caitlin went into surgery to have a shunt fitted.  We were really upset that she had to spend her first Christmas in hospital but we were able to get a camp bed and our own little side room so at least we were together as a family.
Unfortunately Caitlin's surgery had some complications and she ended up needing an emergency scan at 2am on Christmas morning as her surgeon was worried he had nicked her bowel during surgery.  Thankfully he hadn't and on Christmas Day you wouldn't have thought she had just had surgery, she was just back to her usual self.  She amazed me and still does.
On Boxing Day we got to go home! We were so excited, we couldn't get out quick enough! We thought at least now the shunt is done we don't have to worry about it, right?
Wrong.  Just a month later Caitlin's shunt malfunctioned and she was rushed in for her 3rd surgery at just 2months old.  Again, she recovered really quickly, she was so brave.
We got home 2days later and Caitlin really started to developed a little cheeky personality.  Once she started to smile, she never stopped and we were devastated when at 4months old her shunt malfunctioned again.  But it never fazed my little girl, the nurses were even surprised that after her surgery she didn't need the pain relief usually needed, she just bounced back and recovered brilliantly.

The day our baby girl was born

Caitlin Rose McAuley -Steenson was delivered by C-section on 9th of December at 12.50pm weighing 7pounds 11ounces.  It was a totally surreal experience.  When they lifted her from me and I heard her cry, spina bifida was the last thing on my mind.  The doctor held her up so I could see her before she was whisked over to the other side of the room to be assessed.  Then a nurse bought her to me and let me have a cuddle! They weren't sure if I would be able to get to hold her so I was so happy that I did.  David captured that moment on camera...

I could only cuddle her for a few seconds then David got a cuddle and then she had to go into an incubator.  The paediatrician started to explain to me that Caitlin definitely did have spina bifida and went on about other stuff but to be honest I wasn't really listening.  I couldn't take my eyes off her.  She just looked so perfect.

                                          

The rest of my pregnancy

The next four months of my pregnancy were like a rollercoaster.  There was high points and some really low ones.  When we got back from Donegal, there was a letter waiting for us.  We had an appointment for a scan to be done by a specialist two days later.  That scan was probably the best scan we had after the baby was diagnosed.  The doctor was lovely and really reassuring.  She told us the spina bifida lesion was located at the bottom of her back which was really good, as the lower down it is the less damage there is.  She told us that our baby was kicking and that the fluid on her brain was very mild.  And we got the best news of all.  We found out we were having a girl!
The doctor offered us a aminocentesis as my baby was at a higher risk for having additional problems, such as having Down's Sydrome.  I refused it because there is a risk of miscarriage and after our scare I was not taking that risk, no matter how small it was!
We had scans every two weeks and when I was 28weeks pregnant a different doctor scanned me.  He thought her spina bifida was higher up than Dr. Hunter had thought and it was actually in the lumbo - sacral area rather than confined to the sacral area of the spine.  That was tough to hear.  We knew that the sacral nerves were damaged which meant she would have bladder and bowel problems but the lumbar nerves controlled the legs, so now we were faced with the nerves in her legs being damaged.  We met with a pediatrician who explained that our daughter would be just like any other child, except she would be in a wheelchair.

To cheer us up, my mum offered to pay for a private 4d scan for the following week.  We thought it would be good to see her face and her little features rather than scans that consisted of measuring fluid in her head and assessing her back and leg movement.  When we got there I remember me and David laughing that we didn't exactly fit in.  It was so grand and expensive looking with classical music playing.  And there was us dressed in jeans and trainers, while everybody else looked like they had quite a bit of money!
When we were called in we told the radiographer we already knew our daughter has sb and hydrocephalus and we were just looking forward to seeing her.  It was amazing seeing her little face on the screen.  She even picked her nose while we were watching her! She was moving around loads and I was really surprised because I couldn't really feel her - my placenta was infront of the baby so I didn't feel much unless she give me a huge kick!  During that we were just looking at our daughter and spina bifida wasn't part of the picture at that moment.  But then of course the radiographer hit us with a huge blow.  She told us she thought the baby had quite a bit of fluid around her brain and when she give us her report she had wrote that her hydrocephalus was severe.  So, the hydrocephalus had went from mild to severe within 9 weeks.  I still had another 10 weeks to go.  If the hydrocephalus continued to increase at that rate, it would start to squash her brain.  That's it, I thought.  My daughter is going to be brain damaged.

Thankfully, I had really good support from a forum I had joined, Spina Bifida Connection and when I posted my concerns, I got replies telling me that a baby's skull has not fused yet so there was plenty of room for the fluid without it causing pressure on the brain.  I then thought she would be born with a massive head.  They reassured me she wouldn't.  At my next scan I told the doctor what the radiographer has said and she scanned me, and told me the hydrocephalus wasn't severe.  It was mild to moderate.  But every scan we went to it was increasing.  I even thought they would end up delivering her early because of the hydrocephalus.  In the end though they scheduled me for a C-section for when I was 38 1/2 weeks pregnant.  The 9th of December 2009 was the date my daughter would be born.

Coming to terms with spina bifida.

The day after the scan myself and David had planned to go on a weekend break to Donegal.  We had spent the past 24hours crying, thinking about spina bifida, trying to find out more about it and driving ourselves crazy.  So we decided to go to Donegal as planned.  There was no point staying at home glued to the internet trying to find out what our baby's life was going to be like because the internet had no definate answers. 
So off we went.  We spent the weekend talking and trying to come to terms with what had happened.  It still felt a bit unreal.  We were grieving for the healthy baby we thought we had,  we still had the same baby but this baby was going to be disabled.  Then something happened that completely changed our perspective on everything.
I started to bleed. 
We rushed to the nearest hospital and ended up in the wrong spot, with David running up and down empty corridors trying to find a doctor.  We eventually found a member of staff who told us we were in the wrong hospital and had to go to across the road to the other part.  When we got to reception the room was full of waiting patients and I thought we would be there a while.  But when David explained what was happening we were sent straight up to Gynacology who sent us to Maternity.  I was a blubbering mess.  I thought I had stressed myself out so much I had gone into labour or I was losing the baby.  The past few days had been centred around spina bifida and now it just didn't matter anymore.  I just needed my baby to be alive. 

After what seemed like an eternity the doctor came and took me to be scanned.  She watched my baby on the scanner and pointed out to us her little heart beating.  She was just fine.  And I had never felt so happy.  

The day of the diagnosis

30/ 07/ 2009.  The day that sent our whole world into a spin.  My 20 week scan.
I was really looking forward to my scan.  We had only had one scan before and it was just amazing.  Our baby was waving to us and jumping around and I went into this scan looking forward to seeing her.
When we walked into the scan room it was different than before, I suddenly felt nervous and I didn't know why.
The radiographer was quiet as she scanned me, and she spent alot of time looking at the baby's head and spine.
Then she stopped, turned to us and said, "I'm just going to have to get the doctor, there might be a problem with the baby's spine."
My heart sank as she walked out of the room and I turned to David and said, "What if it's spina bifida".  I don't know why that popped into my head, I didn't know hardly anything about it, I knew my cousin had it but it was nothing we had worried about.  I had taken my folic acid before I conceived my baby so I thought spina bifida wouldn't affect us  - but now I wasn't so sure.
David reassured me, he told me that the radiographer probably just needed to make sure everything was okay and that they probably double checked with the doctor all the time but neither of us could take our eyes of the image frozen on the scanner.  It was of our baby's spine and towards the bottom there was a blurry white mark that wasn't anywhere else.  We just stared at it hoping that our baby was okay.

Eventually the doctor came in accompanied by the midwife and turned the lights on and asked me to sit up.  Their faces were full of sorrow and concern and I knew it was bad.  I braced myself but it just didn't seem to be real.  This kind of thing happens to other people.  Not us.
But it had happened to us.  The doctor explained that our baby had spina bifida.  I found myself asking tons of questions, I can't even remember what they were and I don't really remember her replies.  She mentioned a wheelchair a few times and that we would find out more when we had a scan done by a specialist in a few days.  I remember the midwife was rubbing my foot and David was rubbing my back while I was trying so hard not to burst into tears.  The doctor asked me was there anything else I wanted to know and I asked her was there anything else that appeared to be wrong.  She hesitated then told me that there was some fluid on the baby's brain.  It was at that moment I just completely broke down.  I imagined my baby in a wheelchair, mentally disabled and having no quality of life.  Yet there was no doubt in my mind of one thing.  I was going to keep her.  She was still my baby and I loved her.

When we got home I was on the internet straight away, typed spina bifida into Google and felt sick as I read what spina bifida meant.  Our baby had a split spine.  Spinal nerves were therefore exposed and damaged.  Spina bifida meant paralysis.  It meant our baby would have bowel and bladder problems. 
Then I looked up fluid on the brain.  It meant hydrocephalus.  Hydrocephalus could cause brain damage.  It could be controlled my a shunt being fitted but the shunt couldn't be placed until she was born.  I was only half way through my pregnancy and I had never felt so scared.

About us

I decided to start writing this blog as October is Spina Bifida Awareness Month.  If you asked me a year and a half ago what did I know about Spina Bifida the answer would have been not much.  Now, I'm becoming quite the expert!
My beautiful little girl Caitlin Rose was born on the 9th of December 2009 with spina bifida and hydrocephalus.  This blog is about our experiences with spina bifida and how we live with it.  I'll start from the beginning, on the day of Caitlin's diagnosis...