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Hi all, this is my story.
My best friend Thomas suggested this Marathon as means of raising money for Fanconi Hope / Team Leighton a charity that is close to all our hearts. Team Leighton is made up of a network of friends and family all directly related to my sister and brother in law. Every year they organise fantastic events and create mad challenges all to raise money for Fanconi Hope. So this is my challenge this year, the Edinburgh Marathon. Please dig deep as this is not a one day race, we train 5 days a week running sometimes up to 20 miles.
The story below is from my sister in her own words.
LEIGHTON - READIE - SMITH
I am not sure where to start, and I don't want to go on and on. My little miracle was born on the 11th of January 2008.
His arrival was stressful enough as he went into fetal distress and I was taken in for an emergency c-section, which went wrong, as due to his condition I was unable to go under anesthetic as my windpipe was swollen and I was sick, which left me critical. I was woken up and the hospital staff tried for over 30mins to get a spinal in to numb me and carry out a section. So when my wee bundle finally arrived, I was devastated to see a huge team of doctors and specialists in, as unbeknown to me they knew he was having problems.
The first thing we were told was that he had to be rushed off as he was not breathing and that he had small eyes and no forearm bones. I lay frozen and asked my partner, Robert, what this meant. He too was unsure.
I had to be taken to intensive care, and we were left not knowing what was happening. The doctors were with him, and when they finally came to see us it was terrible. They told us that he had no forearm bones, no thumbs, one kidney on top of the other, no osophegus (the pipe that takes food from throat to tummy) so he could not swallow as it could not go anywhere. Small eyes, increased ventricles in his head, a hole in the heart.
I just froze.
I could not believe that this was happening. My partner was able to go down and see him. He was tiny - 5lb 2oz. He was fully ventilated as he was not breathing well enough for himself. My partner brought me a photo up and I broke down when I saw my little boy all hooked up to lots of different machines and tubes. It was my worst nightmare and I wanted to swap places with him. I just thought it was all a dream. We were both devastated.He was such a wee fighter and soon every nurse and member of staff loved him. It was hard not too as he had so much going on, and about every specialist in the hospital were involved with him.
He was a popular wee miracle, thats what we all called him, our little miracle – Leighton.
So gradually, day by day, the doctors found more and more things wrong with little Leighton. He was not growing or putting on weight and all of his hormones were affected as he had problems with his pituatry gland, so things like his growth was affected. Pain hormone was low so any operations he had he had to be given extra steroids to help with this. His thyroid was really low and he had to be given medication for this also. He had bad jaundice and the doctors beleived that this was due to the fact that his liver was not working properly. I just felt like what else could go wrong. I continued never to give up hope, but I just kept thinking that I was watching all these other babies coming and going and my wee boy was not getting anywhere.
Lots of different procedures where carried out and they realised that Leighton had a very rare genetic disorder that they only knew of another 5 cases of worldwide. I just sank and thought the worse as no one knew what was going to happen. I travelled up to the hospital every day for 13weeks and we met with the docs and specialists on a daily basis.
Then one morning when I went in, I thought that he did not look so well and his breathing was a bit laboured. Leighton then crashed and stopped breathing. I had to leave and I felt helpless as the team worked on my baby. He had to be totally sedated and ventilated. It was awful he could not move. He had taken a severe infection and just could not cope. It was horrific. We met with the team but no one knew what to expect. I never left his side.
Over the next week we got a phone call during the night to say that his heart rate was dropping and they did not think he would make it so we rushed up but he came through it and stabilised. He was amazing.We came to the point that he was ready to come off the ventilator as he was breathing for himself, however the specialists realised that his lung patterns were abnormal and the wind pipe was soft and could collapse. This would need operated on but he was not strong enough at this point to survive the op, so he would have to come off the ventilator and get a bit stronger first.
We had another meeting with the team of doctors and they basically told us that they were going to take Leighton off the ventilator and it would be up to him to decide how things were going to go, but they did not want to re ventilate him if he could not cope as this would then lead to us having to make the decision to turn off the machine, which both myself and my partner felt would be a million times worse, if that was possible.We wanted Leighton to decide what he wanted to do.
This was the hardest thing in my life. We were allowed to stay with him the night before they took him off the ventilator, which was the first night we had ever spent with him and I still could not take him out and hold him as he was on lots and lots of machines and tubes.
The day before he came off the ventilator we had all the family up and Leighton was amazing. It was the only time that we have ever knew him to stay awake all day and most of the night.
I believe that he was saying goodbye.
The next day they took him off at 11am and I sat and held him all day, but I knew he was struggling. After an hour or so, all the staff came in and kissed him good night which was so so sad but they were his family too as he had never been out of the ward or home.
Everyone was in tears, there was not a dry eye in the ward.
Just after 11pm my little miracle could not take anymore and he finally fell asleep. I just told him to let go as I did not want him to suffer anymore. A piece of me died with him.
As he stopped breathing, his Daddy held him on his chest till his heart finally stopped.
When we had to leave the hospital I just could not walk. I did not want to leave my baby in the hospital alone. It was the hardest thing that I have ever had to do, and I just do not know what to do or how to get over it.
I dont think I ever will, but I keep him alive in my memories and pictures of him and I am sure this will also help.
God bless all the little angels, love to you all xxxxx
