I was born on 16th December 2007 in Norwich, Norfolk UK. I arrived at 05:29am and weighed 5lb 14oz.
Initially all seemed well and I went home with mummy and daddy later that day. I was checked by a lady who came to see me at home and had put on a small amount of weight. I was very good and didn’t wake mummy and daddy in the night from 8 weeks old! (Mummy and daddy were very impressed!)
Then I had to go to a hall where there were lots of people and lots of babies. Their mummy’s were putting them on scales so they could be weighed and eventually it was my turn. The lady told mummy I had lost weight and that I needed to see a doctor.
Mummy took me to see the doctor a few days later and he said that he could hear a heart murmur. Mummy was very upset and daddy said she shouldn’t worry as it was probably an ‘innocent murmur’ that would more than likely correct itself. Over the next few days though I lost more weight and another doctor got very worried and asked mummy and daddy to take me to hospital. The doctors there arranged for me to see a specialist from a hospital in London called Great Ormond Street Hospital for Sick Children.
The doctor came to see me and used a special machine to look at my heart. After a while he told mummy and daddy that I had two problems with my heart and asked if we had any plans for the following day. They said no and he replied “Good, because you need to come to my hospital in London.”
The date was 4th March 2008.
The doctor told mummy and daddy that I had two heart defects, ALCAPA (Anomalous Left Coronary Artery From the Pulmonary Artery), which meant my coronary artery was in the wrong place, and Mitral Regurgitation, which meant blood was leaking from a valve at the bottom of my heart causing blood to flow back into my left ventricle.
The doctor said the only treatment for these conditions was surgery that was very specialised and the only place it could be performed was in London. Mummy and daddy were very upset and I tried to make them feel better by giving them lots of cuddles and smiling lots!
The next day me and mummy went to London in a big van with pretty blue and red lights on it (the man driving it didn’t put them on for me though so I was a bit disappointed!). Daddy followed us in his car and my brother, Dylan, stayed at my nanny’s house.
When we got to London we were taken to a ward in Great Ormond Street Hospital called Ladybird Ward. Lots of nurses and doctors came and stuck nasty needles into my hands and feet but mummy and daddy were there to make me feel better with lots of cuddles. They slept next to my cot and the next day, 6th March 2008, more doctors and nurses came and so did my auntie Cassie.
The doctors told mummy and daddy that the operation I needed was to re-position my coronary artery to the correct place on my heart and was a very difficult and risky procedure. They were told I could die or might suffer from brain damage because I had to be connected to a special machine to take over the function of my heart. Mummy and daddy were taken to a special ward called Cardiac Intensive Care Unit (C.I.C.U) so they could see where I would go after my operation.
A little bit later daddy carried me downstairs to a big white room and mummy kissed me before daddy took me into a smaller room where lots of people in blue gowns were waiting for me. He laid me down and a man made my hand go cold! I coughed and Daddy kissed me and I fell asleep.
I don’t really remember much after that. Mummy and daddy said I was asleep for over 5 hours before they could see me again. I was taken to C.I.C.U where they had been that morning and lots of nurses were giving me medicines and milk through tubes that were attached to my hands and feet and other places.
Mummy and daddy were very upset and didn’t stay very long. Daddy said they had to go to tell everybody that I had had my operation and I was now in intensive care. Mummy said they cried because I didn’t look very well and had tubes all over me. When they came back a bit later I was stable and fast asleep. They stayed with me and held my hands and stroked my head while I slept.
The doctors and nurses really helped mummy and daddy and even arranged somewhere for them to stay near the hospital. They told mummy and daddy what was happening to me and explained what all the drugs I was being given were for.
I became very unwell and had to be moved into my own special room where I had a nurse with me for 24 hours every day and I stayed there for 3 weeks. Daddy had to leave me and mummy because he had to go to work so mummy carried on coming to see me every day and daddy telephoned every day to see how I was. Daddy came to see me again at the weekends and brought my big brother, Dylan with him too.
After 3 weeks I still hadn’t got much better and the doctors told mummy and daddy that I needed a second operation. They were told that, due to me being so weak, I may not survive but if I didn’t have the operation I wouldn’t survive at all so they had to agree to let the doctor go ahead.
Lots of my family came to see me before my operation including nanny and granddad K, nanny and granddad B, nanny and granddad H, Auntie Cassie and Uncle Dom, cousins Cain and Callum, Uncle Justin, Uncle Brett, Auntie Lisa and my big brother Dylan. I was really pleased to see them all and tried to tell them I would be fine and would see them all again soon.
My second operation was originally planned to take place on the 27th March 2008. But this was my big brother’s birthday and I didn’t want to spoil his day so I got a rash and the operation was postponed.
I got better over the weekend and on Monday 31st March 2008 I was taken to have my second operation in 3 weeks. It took over 6 hours and I was then returned to my special room where mummy and daddy were waiting.
I stayed in my special room for another 2 weeks before I was well enough to go back to Ladybird ward. While I was there I couldn’t manage to drink all my milk so the nurses showed mummy and daddy how to feed me through a little tube that was in my nose! They did really well and I tried very hard to drink my milk so the nurses could take the tube away because I didn’t like it!
Mummy and daddy asked when I could go back to the hospital where I was born and the nurses said I could go in a couple of days. Mummy and daddy were very pleased! I had another ride in the big white van (but the man still didn’t put the pretty lights on)!
When I got back to Norwich I had lots of my family come to see me. They could see that I was still poorly but I tried hard to smile and be happy. The hospital in Norwich had special televisions that mummy and daddy let me watch. I liked that a lot and love ‘In the Night Garden’ (so does daddy but don’t tell anyone!).
While I was in my local hospital I had the rest of my injections that I missed because I was unwell. They hurt a lot but I only cried for a little while. The doctors and nurses kept taking blood from my feet and sometimes my hands and I didn’t like it. Mummy and daddy made me feel better with lots of cuddles though. I kept having to be woken up to have medicines and milk but I was sick a lot so I wasn’t getting any bigger.
I slowly started putting on weight but was still being sick. The doctors and nurses decided to change how I had my medicines and also changed my milk to a different kind. After a few weeks I started feeling better and used to be awake ready for when mummy and daddy came to see me in the mornings. I liked it when they came and gave them lots of smiles to let them know I was feeling better.
Sometimes mummy would come on her own because daddy had to work. When mummy went home to pick my brother up from school, daddy would come and see me before I went to bed. I was always sad when they had to go and used to pretend I was interested in my television so they wouldn’t feel too bad.
After a while the doctors asked mummy and daddy to have a meeting so they could talk about the ongoing care I would need once I came home. There were lots of people there and mummy and daddy told them they wanted me to come home. The doctors agreed and I was allowed to go home on Friday 23rd May 2008, 11 weeks after I first went to Great Ormond Street Hospital!
I was so excited but I had caught a virus that nobody knew about…
I was so happy to be home! Our cat had had some kittens while I was away and there was only one left because the others had found new homes. I hadn’t seen a kitten before and he was really small and cute (mummy and daddy said he wasn’t as cute as me though!) and I loved watching him play!
My big brother was really happy I was home too and told me he missed me lots. I smiled at him but wasn’t feeling very well. Later that night mummy had to take me to hospital because I had a temperature. Daddy was working to help a friend so he came and met us at the hospital in the morning. I was allowed home later that day.
When I got home again I slept a lot and when I woke up mummy and daddy cuddled me lots. The tube in my nose was annoying me so, when mummy and daddy weren’t looking, I pulled it out! Mummy took me back to the hospital where the nurses put another tube in my nose.
Later on Sunday night I had a very upset tummy so I had to go to hospital again. The doctors watched me for a while and let me go home in the middle of the night. Later that Monday though my tummy started hurting me a lot and I was very sick and kept leaking yukky stuff from my bottom! Mummy and daddy took me back to hospital and the doctors let me stay in the room I had left a few days earlier.
Overnight my tummy got worse and I was sick a lot. The doctors got very worried and put me in my own room where a nurse was watching me all the time. I got very hot (mummy and daddy said I was 39.8 degrees) and kept trying to cry but I couldn’t because I was so tired. Mummy and daddy stayed next to my bed all night and in the morning I started feeling a little bit better.
The doctors told mummy and daddy that I had a bug called Rota Virus that caused sickness and diahorrea. I lost a lot of weight that I had worked hard to gain and needed lots of special water to stop me being so thirsty. Mummy and daddy put a wet sponge stick in my mouth and I liked that a lot!
Because my tummy was so sore the doctors wouldn’t let me have any milk for a whole day and night! I was very angry and upset and was really hungry. Then the nurse gave mummy and daddy a very little bit of milk that I finished in 2 gulps, but wouldn’t let me have any more. But I think I was allowed to have milk more often because it didn’t seem as long to wait for each one so I got used to it.
I was in hospital for over a week and my tummy stopped hurting after a few days. Then mummy and daddy told me I was coming home again so I had a plan…
I didn’t like the tube that was still in my nose so waited until mummy and daddy had gone home. The next morning I pulled my tube out just before mummy came to see me! The nurse was thinking about putting it back in but mummy asked if they could leave it out. The nurse asked the doctor and, because I’d been drinking all my milk, I was allowed to go home without it being put back in! My plan had worked!
I went home on the 4th June 2008 and I am being very good and drinking all my milk and taking all my medicines. I’m looking forward to seeing daddy go in the sky in an aeroplane and watching him jump out with a parachute (I don’t know what a parachute is, nor an aeroplane come to think of it, but mummy and daddy said I’ll like them!). Daddy said he will put pictures on my website when he’s done it.
That’s my story so far. I hope my website helps other mummy’s and daddy’s who are going through similar experiences to mine and is a source of inspiration to them. It is also dedicated to all the very special doctors and nurses who do an incredible job at Great Ormond Street Hospital. Without their dedication and professionalism I wouldn’t be enjoying my cuddles and playtime with mummy, daddy and Dylan.
Thank you for all your messages and support!
Lots of love, Tiana xx