Ballet was on the way !

Tina: Well life was going as expected. We had done well and the date came to have the plaster changed. Back into hospital we went and by now we new the procedure quite well. The lovely nurses were pleased to see us and in the short time of the first plaster Laura-Jane had grown some more and changed. The 25th April 1996 the plaster was changed and we had to stay in whilst it dried out. We left the hospital with the excitement that this would be he last one !!! I had everything set in my mind how life would be great at last and then we could press on with everything we wanted to do.

New clothes, no heavy lifting, no Velcro pants, a proper pair of shoes, what an absolute treat that would be. Laura-Jane hadn’t quite turned two and her birthday in the coming October would be a massive celebration. I knew she had to learn to sit, crawl and walk all over again but somehow I also knew this new plaster would soon be off and life would get be good again, not that it wasn’t good and she was safe and well but life with a Spica plaster has its challenges.

The weeks flew by as expected and the day had arrived to go back and have the plaster removed. I always felt nervous on plaster removal day as we went into the plaster room and Meg would remove the plaster with a little handheld  circular saw, it sounds awful but it really wasn’t, the worst part was the noise which was quite loud and Laura-Jane didn’t like it. She would try and wriggle and as a parent you really don’t want to see your child upset by anything but it had to be done and there was always a treat close by.

Laura-Jane always had an x-ray to see what had taken place with the ball and socket. After the x-ray we waited anxiously for the consultant to discuss the results. The operation to correct the hip joint had FAILED again. As I write this it all comes back to me like it was yesterday. I didn’t cope with this news very well at all and the disappointment was horrific. We had gone through all of this again and failed. My heart sank and looking at Laura-Jane I felt that I had failed her. I had been telling her for all those months that everything was going to be fine, no more plaster, no more pain, no more anything and how could I have been so wrong. I knew she didn’t understand what was going on and I wasn’t sure I could carry on with it all. I spoke to her surgeon in depth and I can remember us all sitting in that room feeling devastated and it wasn’t easy for our consultant to know it hadn’t worked, we were all upset but Laura-Jane was happy to be plaster free.

Looking back through all the paperwork from the hospital I see notes saying ” advise Laura-Jane does not sit back on her heels” and “encourage to sit for longer periods”. The consultant decided that he would leave Laura-Jane now until just before she was due to start school which would be in 1999. So I was left with a massive gap before the next operation. Laura-Jane had one leg shorter that the other and it noticed when she walked as she was on tip toes on the left leg. I decided to make the most of this time and give Laura-Jane a very normal life.

Laura-Jane had to learn to walk again and with hydrotherapy and physio she managed very well. I asked her consultant if she could go to a ballet class. To my surprise he said “yes of course it will not do her any harm and if anything it will be good physio for her and keep her moving”. So off I went to find a Local ballet school.

Ballet probably doesn’t seem like a rational choice for a child who had been through so much already in such a short life but I as a child had a very small taster of a ballet class and loved it. My opportunities in life were so different back in the 70’s and I had already decided in my mind that Laura-Jane would have a chance to try different things. It just so happened that over the years she also did swimming and ice skating later on.

With this mind set I found a small ballet school that was owned by a lovely lady called Miss Lisa. She was wonderful with Laura-Jane and even in the early weeks Laura-Jane fitted in despite her being on tip toes on her left leg. She had a pair of white satin ballet shoes that she has used the previous summer to be bridesmaid for one of her nurses who looked after her in the hospital and a very small pink leotard. She looked beautiful and loved going every week. The early classes were all about good toes and naughty toes, anyone who has done ballet knows all about this :). The weeks went by and Laura-Jane was very happy going to Ballet and I loved taking her. She made friends with two little girls called Emma and Harriet. Little did I know that this first Ballet class would lead to much bigger things. We were not about to let a dislocated hip get in the way of anything. Just because you are a little different physically to others doesn’t mean you can’t achieve your own goals in life, anything is possible. The ballet class also gave Laura-Jane confidence among other children. Laura-Jane started dancing in September 1997 and had her third birthday in the October 1997. She would come home from ballet and do her exercises and show me everything she had done, even so young she was already hooked on dancing. She would also dance in front of the TV to Barney the dinosaur and six little ducks with her umbrella in her hand, she really was a beautiful little girl who loved life and boy she had a rough start.

From Sept 1997 until Jan 1999 Laura-Jane went to her ballet class every week with more enthusiasm than the previous week. She loved her weekly class and the thing in the back of my mind was how would I tell her she had to have yet another operation. She could sit up straight and walk, the thought of putting her back into a Spica plaster absolutely crushed my heart. She was still so tiny and was doing so well but the limp was always going to be there if she didn’t have more surgery. I went over every scenario of operation success and failure and what the outcome would be and the future Laura-Jane would have as a result of the decision I had to make. I think back now and I have no idea how I did it but let me tell you in Sept 1996 I met a man who became my second husband in 2001, with his support and the support of my family we got through it and in Jan 1999 Laura-Jane went back into hospital and into gallows traction ready  for the next operation……..

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Operation 2…..Ready for it…

~Tina… The freedom from the Spica plaster was wonderful, Laura-Jane’s little legs had recovered nicely and she was doing so well. That dreaded time had arrived for her to go back into hospital for her next round of surgery. I felt confident in that I knew what to expect from the surgery and the consent forms etc but in my heart I was terrified all over again. We arrived back on G floor and it felt like we had never left. All the nurses were there to greet us and they were brilliant. They all made a big fuss of Laura-Jane and she recognized them and felt at ease with all of them. Laura-Jane has never really been a shy child. As for me, they all reassured me that everything was going to be fine and looking back I still can’t thank them enough for everything they did for us both.

7th Nov 1995 Laura-Jane was put back into gallows traction. I wasn’t sure how this was going to go because Laura-Jane had been plaster free and was also talking. She had a wonderful 1st birthday back in the previous October and the time had gone so quickly. The week of traction was hard again and her hair had grown back and I feared her little head would go bald at the back again but traction was only for one week as the surgery was scheduled for the 14th November.

A couple of days before the operation I had noticed Laura-Jane’s nose was blocked up and she felt quite warm. We put this down to the room being warm and her being laid  down flat on the bed. The day before the operation the consultant arrived in the morning to talk everything through with me and to check Laura-Jane was ready for surgery. He spoke to me in his gentle calming voice which was reassuring and then turned to Laura-Jane. I was in the room but I think I was so worried about the whole episode again I didn’t really pay to much attention to his conversation with the nurses and his team. Their conversation seemed to go on for quite sometime and he checked Laura-Jane over and said ” sorry no operation today, Laura-Jane is not well enough to take an anesthetic”

The snuffly nose and warmth was due to a cold !!!!! A bloody cold !

Gutted doesn’t even come close to say the least. We had spent the whole week in hospital in traction to be told this news, if you have ever felt the rug being pulled from under you well this was my moment. I was in the zone prepared in my mind for this surgery and couldn’t quite believe I was going to have to pack our things up and go home. The void was massive and we were all distraught. I can only imagine it felt like preparing for say a marathon and then to be told it has been cancelled due to the rain. I had prepared everything at home and all friends and family knew it was surgery day and were eagerly awaiting calls to say it had gone well and she would be back on the ward in her brand new Spica plaster and instead I had to compose myself to tell them it had been cancelled.

Over the next few days it sank in and we received more phone calls and letters to set a new date for surgery followed. Christmas was only weeks away so Laura-Jane’s consultant said the operation would take place in the new year and looking back it was the right decision and we had a fabulous Christmas without the Spica plaster. I’m so thankful that Laura-Jane had no real understanding of what was going on at the time but on the other hand it was hard as a mother to make possible life changing decisions about her physical being and knowing in my heart that I believed it was in her best interest. The new year came and back onto G floor we went. The good old faithful gallows traction was waiting for Laura-Jane to be placed into again. You would think by now it would be easier but it never gets easier to let go and trust other people to care for your baby.

Laura-Jane had the operation on 30th January 1996 after one week of traction. This time round it was totally different. I could communicate with Laura-Jane and she could talk and say words to me and could point to things and tell me what she wanted. Also this time at home she could sit up at her little chair and table that was provided by the physio dept at the hospital. She sat for many hours at that table and was speaking very well. she would play and watching barney the dinosaur which became her favorite. We didn’t have the “terrible twos” of Laura-Jane touching ornaments or putting toast in the video player because the Spica was on for so long she couldn’t run around like other children. I would hold her or she would ride on her set of wheels that were made for her. I would lay her on the wheels and strap her on with Velcro and she could move at quite speed. The wheels were a T shape with one wheel at the front and two wheels at the back. She wore little gloves on her hands to stop them getting sore from pushing herself along. When we visited the hospital she had her wheels and would giggle because I would have to run after her up the corridor to the lift on A floor to catch her. Everyone we passed thought it was so cute and don’t get me wrong it was, but I would have rather her hip been totally formed but as always both Laura-Jane and I are always positive and we learnt to deal with it and make the best of a bad deal. This episode of the blog might sound like i’m not so positive but at the time I wasn’t and if I don’t tell it honestly and be totally straight with all of you reading this then I cant give a clear account of this early start to Laura-Jane’s life.

On 19th march 1996 I took Laura-Jane to the baby clinic to be weighed in her plaster, she was 17 months old and weighed only 25 lbs, she was like a tiny doll.  25th April Laura-Jane had a plaster change. One special person who made our hospital visits to the fracture clinic easier was a sister Meg who has now retired and even to this day we occasionally see her walking round the supermarket and she stops for a chat and catch up on how Laura-Jane is doing and Meg always tells me what a sweet little child Laura-Jane was and how proud of her she is and in return it makes me proud of all the people who work in our NHS who cared for both Laura-Jane and myself because without each and every one of them we wouldn’t be where we are today that’s for sure. Another source of support was given to us from a local school for children with disabilities called Saxon Wood. They provided me with very large nappies as none of the shop bought nappies would fit and potty training was not an option in a Spica plaster, again potty training is something we all think will be a natural progression for our children but CDH had its own impact on that and it was not to be.

The weeks went by and Laura-Jane had grown and was too big to fit in her pushchair so I bought a twin pushchair and took out the middle so it would accommodate the Spica plaster. We also put a little flag on the front so when we were out and about anyone passing would see the flag before they bumped into Laura-Jane’s little left leg that hung over the side. Despite all the pain and discomfort throughout this whole experience Laura-Jane was so happy and so determined. One thing I hadn’t really thought too much about was the scar left behind by the surgery. Little did I know that it would grow as the surgeon went back into the same scar each time he operated. Also there was another difference this time… the Spica plaster had a bar across the legs, so the right leg was covered down to the knee but the left leg was covered to her toes with enough room to wriggle them and the wooden bar enclosed by the plaster of Paris jutted out and at times was uncomfortable for me as it sat right on my own hip when I carried Laura-Jane. I actually put padding on it and that solved the problem. Her weight this time had increased due to the size of her and the plaster, but we managed and as always where there’s a will there’s always a way !

 

Shattered hope…..

Mother’s day seems like a perfect opportunity to publish this post and remind us all that we don’t own our children but are blessed to love them and guide them throughout their childhood and hopefully set good examples and provide them with the life skills they will need to survive this world we live in.

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Tina~ The days leading up to Laura-Jane’s check up and results of her first operation to stabilise her hip were very exciting. In my mind I was going to get the news that the operation was a success and that my tiny daughter who was already saying “mum mum” was going to be fine….. learn to crawl, sit up, get ready to stand and finally walk. I had built all of these things up into a wonderful picture of happiness that I had carried with me throughout my pregnancy and after all the hard work of the Spica plaster and not experiencing the natural stages of the the first year there was an awful lot of catching up to do for both of us. I hadn’t seen Laura-Jane’s chubby little legs for months and couldn’t wait for her to wear cute little baby grows for bedtime, nappies that fitted her little bottom and her first pair of shoes!!!!

I sat feeling anxious in the waiting area. We were called in and Laura-Jane’s surgeon was a very kind but straight talking man.

I was ready!!!!!   

The words ” I’m so sorry” still make me go cold thinking back. I sat in disbelief and despair. The operation hadn’t worked. A dark cloud fell over me and I looked at Laura-Jane and cried, the tears running down my face, my long awaited success fading away.  I felt panicked and fretful, it wasn’t sinking in too well. I couldn’t even think about what would happen next but those words came out…… “We will leave it a few months and try again”. Oh my god another operation and another Spica  plaster!!!! Yep that was the plan. Laura-Jane’s surgeon was so dis-appointed, he was so very kind and tried to reassure me I was doing the right thing.

I took Laura-Jane home and had to share the sad news but on the up side looking back, for a short time I could enjoy Laura-Jane out of plaster and we both had freedom. We had the rest of the summer to enjoy being plaster free. Laura-Jane’s left leg was so skinny and she had to make the muscles work again. Eventually she sat upright which was amazing, one of the many things we had missed. It felt strange not holding her as much anymore as she was off on her own learning to crawl and bum shuffle. Oh god, I totally forgot about the stairs and had to get a stair gate quickly. It must have felt great to Laura-Jane not to be either held, laid on the floor or in her pushchair. The most amazing thing was giving her a lovely bath again and watching her wriggle in the bath with bubbles and freely kicking away. We were both in a happy place just for a few  months. My health visitor was so important at this time, it was her that had long chats with me and talked everything through, she made the whole thing seem not so bad.

As the days went by I worked out in my head what would happen with the next operation. At least I had a knowledge of the  Spica plaster and that did come in handy for round 2. Laura-Jane can’t remember any of this, she was coming up to her first birthday. Sometimes this blog is hard to write, to go back and remember everything. Its difficult to try and stay focused and not end up as an emotional wreck as I’m writing this. In a way it’s quite sad that I didn’t have a  support group with other mum’s going through the same as me. In 23 years I have never really been one to open up about Laura-Jane’s CDH, maybe because deep down I thought she would be treated differently and as this blog goes on I will tell of the difficulties we went through and of everyday things that parents and children take for granted. Times in life got very tough and we had to fight to get Laura-Jane to where she is today, But we did it!

 Operation number two was in sight…

The slow road to home…

Tina..  Well we both survived the whole traction stay in hospital and apart from a nasty tummy bug and a slight delay on the operation date things had gone very well. Laura-Jane arrived back on the ward with a sheet over her and was very sleepy due to the anesthetic. She hadn’t had anything to eat or drink prior to the operation and as always that is the first thing that you think of. I was very anxious about looking to see what was under the sheet… 

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The Spica Plaster!

This plaster of Paris cast consumed Laura-Jane’s whole torso and went right down to her ankle on the left leg and only to the knee on her chubby little right leg. Congenital dislocation of the hips to my understanding is that the hip ball is not in the socket. The problem being, when the surgeons operated on Laura-Jane they found no ball and no socket !!!!!  The hip joint had not grown properly and therefore they had to go to plan B which was to try and make one, this didn’t happen on the first operation sadly. I thought we would be going home the next day but we had to wait a few more days until the Spica plaster had dried out. The tubes and needles were removed and a couple of little bruises remained. I was thrilled to be able to hold Laura-Jane in my arms as I hadn’t been able to when she was in traction for all those weeks. She felt quite heavy in the plaster and I knew the muscles in my arms would get stronger by the day as would Laura-Jane’s from laying flat on the bed in traction. I held her so tightly I didn’t ever want to let her go. As I checked her over I could see the back of her little head had gone bald due to the laying on the bed and when she had visitors she would be turning her head from side to side and she had rubbed her hair away, it soon grew back. Laura-Jane had a full head of dark hair when she was born with a clump of blonde hair on the left side of her head just above her ear and I still wonder if the blonde hair and the left hip are somehow connected or maybe as a parent we try to link things to help explain them.

Clothes !!!

I hadn’t given much thought to clothes as I didn’t know what to expect, I hadn’t seen other children like Laura-Jane. The nappies I had bought would not fit over the plaster so larger ones were needed. Dresses and loose clothing would be Laura-Jane’s wardrobe for the next 12 weeks and bless her no shoes, only pop on booties and rather large socks. The first Spica plaster didn’t have a bar across the middle which made holding her a lot easier. I could lay her on the floor or lay her in her pushchair. For a couple of days we walked up and down the hospital ward waiting for the plaster to dry and I cannot put into words how much I cherish the support I received from family, friends and the hospital staff during our stay on G floor. Bringing up meals to me, getting shopping, clean clothes, even my sister who’s little boy Shayne, was 2 years old at the time, was potty trained on the ward as she spent everyday visiting us on the ward after she had taken her daughter to school. Little things like someone sitting with Laura-Jane whilst I went to the loo or for a shower, to use the phone down the hall or just to escape the four walls that on some days felt like prison. The whole world was going by outside and we were in our room, we did have a lovely big window for the sun to shine through. Without all this support and the chance to talk things through in the most darkest fearful days, I’m not sure I would have come through this and had the strength to carry on. The impact on your life literally is life changing and everyday you self doubt whether you’re doing the right thing.

The surgeon came to see us and talked everything over and I still think as much as I tried to take it all in,  it took a long time to sink in what we had just been through and what to expect in the days ahead. The discharge papers came as well as the pain relief to take home and Laura-Jane was strapped in the car seat. Appointments were arranged for my health visitor Katie and community nurse Naomi to visit. They were both such an important life line for both Laura-Jane and myself. They shared my worries and my fears in the coming weeks and constantly told me how beautiful Laura-Jane was and reassured me things were going to be okay. Laura-Jane couldn’t do the things…. (I wont say the things normal children do)…. because Laura-Jane was normal, she just didn’t have a hip joint, so she didn’t learn to sit up or crawl at the typical 6 months on wards.

Would she ever walk properly? this was one of my biggest fears and I was determined to give her the best chance.   

Our 2  cats were so pleased to see us when we got home and we had to make a lot of changes to accommodate the Spica plaster. My in-laws bought Laura-Jane a water bed and it made such a difference to her sleeping as the motion and softness of the bed took the pressure off the plaster. In the mornings I would go into her room and find her giggling and making the bed bounce as she did in her bouncy chair with our Siamese cat next to her, she clearly thought it was funny and he didn’t leave her not for one moment even though he was bobbing up and down like a duck on the water. The other thing Laura-Jane would do was hide her dummy down inside her plaster and hold her hands up as if she didn’t know where it was and I would have to get it out and tickle her tummy. She would giggle so much. She was such a happy baby despite everything that was going on around her, she absolutely shone like a little star and she was my special baby.

A couple of weeks had gone by and we had all adjusted to the new way of life. I think one of the hardest things to deal with was taking Laura-Jane out in her pushchair and people staring at us. They didn’t have any understanding of what had happened and I think I suffered a lot of paranoia. I couldn’t stand and explain her condition to every single person but occasionally someone would ask me and I would explain and they would say “poor little thing” but I would think, Laura-Jane had the best surgeon, the best care and the best chance of having the same happy life as any other child and I was going to make sure of that. Still looking back now I can see how far Laura-Jane has come and everyday I feel blessed to have her and so proud of her.

Laura-Jane was nearly eight months old and still in plaster. She had got her first four teeth through whilst still in hospital. The weeks were going quickly but then…

Chickenpox arrived !!!

Laura-Jane looked like Caspar the ghost. She was covered head to toe in white chalky calamine lotion and calamine oil daily. To reach the spots inside the plaster we had to use extra long cotton buds, the ones used for cleaning equipment. She was so poorly that the community nurse eventually called the doctor in to get Laura-Jane sorted as it was unbearable for her in that plaster.  Her temperature was extra high and like you would usually bath to cool down or let a little one run around in a vest with no nappy on this was not an option. Watching Laura-Jane go through this was heartbreaking and tiring. She was tiny in that plaster and wasn’t eating well but She was always a good drinker as a child so fluids were not an issue. Keeping the plaster clean was a task and of course inside the plaster is the wound from the operation which has to be kept infection free. A roll of cotton wool , the stuff hairdresser’s use to put round your face and behind your ears when dying your hair was used to stuff the plaster out. The nappy was then put on like a normal one but it was the largest one I could find. Once I got myself  into a routine life did get easier and that is the secret…. find a routine that suits you and your baby and go with your gut instinct always

At nine months old Laura-Jane had to have a plaster change. It was very straight forward and even though you know what to expect you still have the consent forms to sign and procedures to follow. The same worries for anesthetic still fresh in your mind but you know in your heart that your’e doing the right thing for your baby. The second plaster was fine and we were preparing our selves for the next appointment with the surgeon to get the results……..

The First Op…

Tina~ After the initial shock of being given the news that Laura-Jane had CDH we took her home. The flowers and congrats cards were plentiful and i knew i had to share the news….. but how?  It’s easy to build up in your mind what you’re going to say to family and then friends but actually putting in into words, well that can be hard. Everyone sees the happiness and has no idea of the bomb about to drop. How were we to explain that there is a problem ?, well this is how it went. My family were amazing as were the in-laws but none of us knew anything about it, I felt so in the dark and the worry began to set in.  

The first appointment with the surgeon came and my worst nightmare was confirmed that Laura-Jane was going to have surgery. The so called ‘clicky hips’ were diagnosed and the double nappies were securely in place. The plan was to operate and make a small incision to release the tendon and put the ball back into the hip socket, it all sounded very straight forward but….. she was only a few weeks old and I  wasn’t sure I could go along with her having an anesthetic what with all the other risks involved. She had not long arrived in my world and hers was about to be turned upside down. She couldn’t tell me what she thought about it all and all of a sudden i’m not only responsible for her little life that i’m blessed with but also her whole future which includes adulthood. If I make the wrong decision now then it could cause all sorts of complications for her in later life.

The surgeon and his team were always very clear and very positive about the procedure and the operation date was fixed for April 1995. Laura-Jane was 5 months and 3 weeks old. Laura-Jane was taken into the children’s ward and placed into “gallows traction”, which meant she would lay on her back for some weeks, strapped to the bed and have plasters attached to her little pink legs with bandages wrapped around them and they would then be attached to a bar above the bed which would suspend her little chubby legs in the air. Everyday they would be moved outwards so by the end of traction she would be in a nearly box split positions, legs stretched out to the sides. This was to release all the muscles and tendons around the ball and socket ready for surgery. My explanation isn’t the best but i’m trying to keep it simple. Each day the nurses would come in and change the bandages. Laura-Jane was a wriggly worm and would wriggle her legs nearly free and as much as the nurses laughed, I think Laura-Jane gave them a bit of a challenge. Her legs were checked everyday for sores that the Elastoplast would cause and her legs were moisturised to help with the redness.  Laura-Jane was such a happy baby and even in the traction she would smile and feed very well laid flat on her back,  which i don’t think is that easy to eat laying down, I’ve tried it !! She was an absolute sweetheart. She took it all in her stride.

I grew very close to our nurses especially Lisa, who worked the night shift. Lisa would sit with me at night and we would have a good old chat and she would comfort me as the nights always seemed longer than the days. We shared the worries, the tears, sometimes I got a little cross questioning why me and Laura-Jane were having to go through this and time again I told myself I was doing the right thing and maybe one day Laura-Jane would share that thought and the future would be positive. The days came and went and Laura-Jane picked up a tummy bug and sadly the op was put on hold. She stayed in traction whilst the bug passed and we were in quarantine which meant we had no visitors. I remember thinking “well its just you and me kid”. Laura-Jane laid hanging in the traction so poorly, with the flashing fibre optic lights to comfort her and her pink monkey called Hector. When she was better the surgeon visited us and I could tell he wanted to get the op on its way and once Laura-Jane had clearance off she went for surgery.

The morning of surgery came round very quickly and the stress levels went through the roof. Laura-Jane was ready in her tiny gown and was taken down off traction. I went down to theatre with her and was allowed to go into the room where the anesthetic was about to be given. I had a total melt down and remember the nurse asking me to hand Laura-Jane to her and I froze, I couldn’t do it! I was in a terrible crying state and couldn’t let her go. I knew it was the right thing to do but something was telling me NO. Eventually I did hand her to the nurse but felt absolutely broken , inconsolable. The passing hours seemed like a lifetime and I knew that even after surgery the results we were hoping for wouldn’t come for quite some time. I couldn’t eat or talk I just went to a quiet place in my mind for the next 7 hours that followed. I went back to the ward and the call came at last to go down to recovery to bring Laura-Jane back up to the ward. The shock of going into the room to see my tiny little baby wrapped up looking like a jacket potato in what looked like tinfoil was horrific. I didn’t even recognise my own baby. She had tubes coming out of everywhere. I hadn’t even thought about this and no one had mentioned it to me. I looked at her and cried , what have i done bless her ?, she was asleep and all I could see was her little face. She had a little hat on that looked like a cut off pair of tights with a knot on the top, the weirdest looking hat for such a tiny baby. I went through a million emotions right there and the nurse asked me if i was okay?

No I wasn’t OK ! 

I was in overdrive, all my worst nightmares came at once. No-one prepares you for any of this and you know its not going to be easy. I had never encountered anything like this before and i hoped never to again. We slowly walked along the corridors with passers by staring as they do, trying to see what had happened and who was on the bed. We took Laura-Jane back up onto the ward and the nurses did all they could to reassure me and take care of Laura-Jane. We had only then noticed that Laura-Jane’s pink monkey Hector was missing ! oh my god the panic I felt over this toy monkey was incredible and I know it sounds ridiculous but I really couldn’t help it. He had made the journey to theatre with her, he was looking after her for me and he was by her side the whole time. I told the nurses we had to find him . Luckily, the nurse had put an identity bracelet on him with our name on and a member of staff found him in the lift, he was returned to Laura-Jane. Hector still remains on Laura-Jane’s bed to this day. The next few hours Laura-Jane slept and then the hard work really started, the Spica plaster had arrived ……….

Hector the Monkey...
Laura-Jane in Gallows traction

Life is more than a spica plaster…

Tina~ I never thought I would ever go back and relive what happened when my daughter was born 23 years ago. This is our story and we want to share it to help others see there is light at the end of the tunnel and that its very hard to keep your glass half full but with love, acceptance, strength, determination and hard work it is possible.

10 months of trying to fall pregnant is long enough for anyone to wait when the pregnancy is all you want, a child of your own. You read that ‘wee stick’ and you find out you are pregnant. You know you have to wait many months until you can meet that little person you are carrying inside of you. Throughout the pregnancy you love this little person that you can’t even see. You imagine what they are going to look like and you pray that everything will be okay and they will be healthy. That’s all every mother wants. Having a pregnancy that had sickness the whole way through was a bit of a challenge. No history of birth defects on previous members of the family had been noted, as far as I was aware there were no warning signs or scans to detect what was to come.

Having renal colic at 35 weeks wasn’t easy and it induced my labour. The doctors stopped my labour and said it would be better to go full term for baby’s sake, which meant between 35 and 40 weeks, I had to attend the maternity unit at the hospital everyday to be placed on the monitor (this means they would strap the monitor to your tummy to pick up the baby’s heart beat on the screen). I also had to do a kick chart to monitor how many times the baby would move within 24 hours. One observation that was made was that there wasn’t a lot of amniotic fluid around the baby and she didn’t have a lot of room to move. 

She arrived…Laura-Jane was born at 3:20pm on the 30th October 1994, weighing in at 7.11 lbs and was 52cms long. Following what I think are the ‘normal’ emotions after childbirth, feeling tired, overwhelmed and inexperienced, back on the ward I was left in my room with her, she was in this tiny cot all wrapped up tightly and all she did was sleep and all i really did was cry. I had waited so long for her to arrive and had so many things to tell her. Breast feeding was not an option, Laura-Jane was having none of it, She had her first bottle that evening and then it sort of went quiet.

The following morning when the doctors did their rounds at approximately 8:45am, my world was shattered. Laura-Jane was taken out of her baby grow and nappy to be examined by the doctor and the doctor checked her hips by lifting her little knees to her chest in a circular motion. The doctor then said the term “CDH”!!!!!!. WHAT IS CDH, I was thinking. I was then told by the doctor Laura-Jane had ‘clicky hips’ and that she was to have double nappies straight away. (so my disposable ones went straight out the window) All the questions you think you would ask have not even come into your head yet. A sudden feeling of panic, distress and sadness all rolled into one. The lack of understanding what CDH even was can not be put into words. Looking at your new born baby that now has this kind of disability that you cant see from the outside, and you ask why? why has this happened? where has it come from and what comes next?

Being told it was the left hip only was no reassurance, but thank-god the right hip was okay. The doctors team had their chats, they had explained everything to me but i didn’t take it all in as I was in shock that there was a problem with my precious baby daughter, as they left i  felt very distressed with the news and when I looked at  Laura-Jane, that’s when all the questions come flooding into my head and the tears streamed down my face. “I have let her down, this is all my fault, How will i cope? how will she cope? and what will the future hold?”.

We were discharged from the hospital 2 days later on the 1st November 1994. We left the maternity unit with paperwork containing many appointments for the coming weeks. Laura-Jane was due to have her first scan in the middle of November where we to find out how severe it really was and how life was about to change.