But things were about to change and our life not to mention Scott's was about to turn around, with all my children there was a risk that they could inherit a rare genetic illness from me, but nieve as I was I always thought I have 2 perfectly healthy baby boys why can't I have another, but this time I pushed my luck not to mention Scott's and this time Scott was the unlucky one he had developed the illness and this illness is potentialy fatel in boys, after 24hrs Scott started to show signs of the illness he was taken to the SCBU unit in the hospital and later transferred to Great Ormond Street Childrens Hospital London he was rushed to PICU this was the only place that knew how to treat this illness and they also knew that it was a horrifiic illness and there was little hope.
The following day they told us the news that he did have Ornithine Transcarbamylase Deficiency (OTC Deficiency in short) and that the only hope was to put him on Hemofilteration machine which would work on the basis of a kidney dialasis where by cleaning the blood and removing the high ammonia levels, but in order to do this they would need to put him on a life support machine, we agreed to them doing this we had to give him a fighting chance he had come this far.
To see my tiny little boy laying there with tubes and wires and machines bleeping was every mothers worst nightmare but mine even more so as I knew why he was lying there what he was going through and who had done this to him, I had given him the illness that could lead to his death, a thousand sorry's would never repair what I had enflicted on my son and his family and a thousand sorry's I did say.
later that week when Scott was about 3 days old they told us things were not working as planned and they didn't seem hopeful for Scott's future so they told us they were going to put him back on the Hemofiteration machine to give him another go to reduce his ammonia levels, but if that didn't work they can't do it again as he could hemorage, a day later they called us into a side room and told us they can't continue as they think Scott already had a bleed to the brain so they were going to take him off of the Hemofilteration and then they wanted our permission to let him go peacefully, although they did give us the option to have him transferred to another hospital with hope that he may get a Liver transplant but that hope was dampend when they told us the chance of him getting a liver for his size and also keeping him alive to recieve it was remote and they advised us that wouldn't be fair.
We took their advice and decided our poor little man had been through enough it was time to think of him and if he was suppose to go now then we must let him, we went back to our room and that's where I broke down saying to my husband Clive "I can't i can't let him go I don't know him enough I love him so much but I haven't had a chance to get to know him like a mother should". I pulled myself together somehow and returned to the hospital where we waited for the priest to arrive to baptise Scott.
The priest arrived and a lovely priest he was to, Scott was prepared to be baptised with his auntie Zoe ready to take photo's of his baptisiam, as he was being baptised and the holy water was poured over his head a miricle happend for the first time in 5 days Scott opened his eyes, I nearly passed out with shock I had tears streaming down my face the nurses rushed over and they done another blood count to check his ammonia levels, it returned with a big drop from over 900 when he first was put on the Hemofilteration to 25 a normal level for anyone is around 60 and below, we were told not to build our hopes up to much as they could rise just as quick again but how can we not have hope after that!!
Scott's ammonia levels remained low and he was later transferred to the metobolic childrens ward where he did have a few ups and downs and alot of medicine changes and feed changes including having to be tube fed for a while but after 4 long weeks we were able to take him home.
Finally we were a family together and I was also reunited with my other 2 boys Aaron & Dominic,it wasn't easy having to look after a very sick child and know every time you had to give him one of the vial medicines that it was your fault, but in order for him to survive we had to make sure we gave him a very very low protein mix feed every 2hrs and 3 different types of medicine, we took him back to GOSH the following week to have his ammonia levels checked and make sure he was gaining weight his medicine dosage and feeds were changed constantly to keep up with his growth, but I didn't mind whatever it took to keep my brave little man healthy we managed to keep Scott out of hospital for 4months then he stopped feeding and just wanted to sleep so we contacted the hospital who advised us to bring him in to have his ammonia checked once again, he levels had risen slighty to about 67 so they kept him in overnight but the following day they had risen again this time in the 100's so he was put on what they call amino acid feeding regime to reduce his ammonia, it was at this time they brought up about a Liver transplant and they wanted us to see a peadiactric Liver specialist in Kings College Hospital London, Clive & I went to see her and she told us all about what would happen what tests he would need different types of transplants and she also told us that they hadn't done one on a child with this particular illness as they had not got past the neo natel stage, but she looked hopeful if they could transplant Scott within 3mths he would make a good recovery although it would be tricky, we returned to GOSH and later decided after having long talks with GOSH Professors that this was the best thing for Scott there was no other option.
Test were started on Scott he had Liver function tests, scan, blood tests you name it our poor little man was being put through alot again, he was accepted on the transplant list and we was given a pager just in case, Scott was doing well again feeding well eating a little bit of solid food and we even went on a weekend break to Butlins just to get away from it all the kids loved it all, again we felt for 3 days like a proper family with no sign of a hospital anywhere it was 3 days of bliss Scott loved it.
A couple of months later in december Scott was taken to GOSH for a routine check up and had ammonia bloods done it was at this time where I couldn't go with him Clive took him (Daddy) as we were having a new fire installed and Clive was the only one that could drive, but I had asked Clive to ask the Dr's about having Scott on a nasal gastric tube as he was feeding really bad and I couldn't get enough fluid into him, Scott came back looking really lerthargic and they hadn't given him a gastric tube later that night he got poorly and was admitted to our local hospital his ammonia levels were high again he went on a emergancy regime of fluid every 2hrs no protein he cried and cried and I cried with him realising again what I done to him, but I had to be strong for him after a couple of days I was able to take him home but they left his nasal gastric tube in and we had a peadiatric nurse come to him we fed him whatever he left in his bottle and over the weeks we were feeding him more through the tube, then just after christmas GOSH requested that he had a overnight feeding pump as we needed to get more fluid into him and I just wasn't coping with being able to put over 800mls of fluid into his tube so we were taught how to use a pump which made things alot easier he had a new feeding recipe for his night feeds and he needed it changed twice, again he started to do well and was looking brighter I was looking foward to him having his transplant then we could rid of this dreadful illness once and for all.
In January 2001 everything was going fine I was thinking about buying Scott a highchair and brought him this new Bug activity center he loved it Aaron had his 9th birthday on the 12th and then a couple of days later Aaron was sick and bless him he said to me mum I won't stay downstairs beacause I don't want to pass this to Scott I thought that was so sweet and let him do what he needed to do, a day later I came home from going to a friends house and when I walked upstairs I smelt something I entered Dominic's room only to find that he had been sick to but didn't cry just went back to sleep I lifted him out of his cot and bathed him while Clive changed his bedding when I brought him downstairs he began to be sick again, then all of a sudden Scott started, there was me trying to reach for Scott and rub Dominic's back at the same time I paniced called for Clive to help, we managed to sort Dominic out and get him back to bed but Scott continued to be sick Aaron came down and asked if we needed some help Bless him!!.
We tried in vain to stop Scott from being sick and even put him on his emergancy regime but he kept being sick I phoned GOSH for help they told me to try the emergancy regime again and call back if it doesn't calm down in half hour I did this and he was still being sick so we called again, this time they told us to get him to our local hospital, which wasn't easy as he was constanly being sick Clive was the only one who could drive so he got all his stuff together his emergancy IV pack for the hospital and started the car to warm it up as it was really icy I had Scott in my arms he was getting really sleepy which is not a good sign then all of a sudden he flopped his head back looked at me in such a way it scared me he looked at me with a sea sickness look and either a plea for help! or bye mummy! I screamed at Clive get him to hospital now! he rushed him in the car rushed to the hospital.
I sat by the phone all morning waiting for the phone to ring at about 8am Clive called me to say he is ok he is gurgling at him they had trouble getting a IV into him as his veins did collapse it took them about 4hrs to get the IV up but he was fine what a relief, my sister in law Caroline arrived after dropping her kids off at school I went upstairs to get washed and dressed ready to go to the hospital when all of a sudden Caroline shouted up the stairs "Karen just drop what you are doing and get to the hospital" I asked her what was the matter she just repeated what she just said, but this time I was getting really panicy and I just screamed "WHATS THE MATTER WITH MY LITTLE BOY"!! she said she didn't know but Clive had called mum and he needed me there, I called a taxi and the taxi driver was brilliant he raced there and when I got there Clive was waiting outside he said while he was talking to me he went back to the ward to find Scott was gone and while he called me he had a fit (seizure) and that they struggled with pulling him out of the fit for over 20mins and because they had given him so many drugs he was completly out of it, I asked if he was in a coma and he said no just dopped up.
I went to the ward frightend and there he was my little man laying there helpless the hospital were trying to get him a intensive care bed at GOSH but they were full so the only other hospital that had the Hemofilteration machine was Birmingham's Children's Hospital he was put on a ventilator and transferred to Birmingham by Blue light I watched the Ambulance left with Blue light screaming down the road I cried we followed him and arrived a hour after Scott did he was all tubed and wired up again moniters bleeping away we were miles from friends and family and in a strange hospital the Dr came over to talk to us and thought that Scott wasn't as bad as what they first thought when they heard about him so they decided to wean him off the ventilator and wake him up I sat there all night stroking his tiny face playing his teddy bear it was a musical one and talking to him but Scott didn't wake up, at this point the Dr's were getting worried and decided to do a cat scan.
They came back with the results and took us to a side room where they told us that Scott's brain was really swollen from the seizure's and they didn't see much hope for him and if he did pull through he would certainly be permently brain damaged and wouldn't be the same Scott as we knew, but they were going to give him the benefit of the doubt as they didn't know Scott and they knew he had pulled a suprise on us once before they were also going to give him a anti swelling drug to try and reduce the swelling, they tried this for 2 days at one point even I thought he was going to pull through as he started to chomp his mouth and when the Dr came round I told him this but he said to me that was just a reflex that was not Scott doing that, when he said that and disagreed with what I said I just stood up and said "so what you are saying then is that I am wasting my time and should just go home" with that I walked out I stood outside crying Clive followed me not before the Dr asked him if I was ok? Clive looked at him and said "what do you think after what you said you have no bed side manner".
It was that night while getting some fresh air that it hit me Scott was not going to make it I cried and cried Scott's nurse saw me and came over she talked to me I told her what I felt and she told me outright Scott won't survive the swelling was to massive, the following morning the Dr's once again called us to a room and told us once again there was no hope for Scott he was going to die and then they went on to talk about organ donation they wanted his heart valves and cornia's we agreed to the heart valves but not to the cornia's our little man had to see in heaven he was taken off of the hemofilteration machine and all drips except a painkilling drip and they left the heart moniter tabs on him, they called the priest for us again and as they told us they thought he would die as soon as the ventilator was removed we wouldn't let them remove it until he was read his last rights by the priest.
The priest was lovely he read Scott's rights and just after we let them remove the ventilator 4hrs later Scott was still breathing and I sat there with Clive holding him and rocking him and loving him hoping for a miricle the Dr came back in and upped his pain relief as he thought he was getting into distress and 2hrs later I passed Scott to Clive as I needed the loo but something made me look at the heart moniter and I noticed he sats going down I snatched Scott off of Clive and told him to get help, I don't know why beacause I knew they couldn't help him a nurse came in and watched the sats moniter and he was stroking Scott's head I was looking at Clive sobbing I could feel Scott slipping away and there was nothing I could do a mother is suppose to be able to help their children and I couldn't help him, Scott all of a sudden stopped breathing but then started again for a split second I pushed my lips against his face and hushed our beautiful baby boy to the world of Angels it was then he took his final breath at 6:40pm on the 20th January 2001 Scott died in my arms with daddy hugging us.
I couldn't look at Scott after he died and I wasn't going to let him go the nurse and Clive tried in vain to make me look at him and let him go to the nurse but I wasn't going to let anyone near him now, after a while I did look at him I was so scared of seeing someone that had died as I have never seen anyone who died before I looked at him and he was just asleep looking peaceful and relieved I went to let his family know they all came rushing up I sat there for a further 7hrs holding Scott.
We went back to Birmingham's children's hospital the following day with Scott's Grandad and dressed him in his disney outfit and gave him his blanket and his snuggle blanket to I laid on the bed with him and stroked his tiny face and again told him how brave he was and how sorry I was for putting him through all he went through, the nurse took some photo's of him laying there with his blankets and toys, all these went with him to heaven including a chain from his nan & grandad B beautiful it was to and a letter from his brother Aaron which read Happy birthday when it's your birthday, merry christmas when it's christmas we will always think about you and miss you, We love you Scott!. he also took his dummy and not fogetting the rosary beads that Shiv & Lance gave you.
Scott had a beautiful funeral 10days later he had a catholic funeral and 2 white horses drawing his carriage he had lots of cards and lots of beautiful flowers, it's at this stage I want to thank everyone who sent flowers and sympathy cards to Scott and also donations to Scott's GOSH fund to raise money for a hemofilteration machine.
I THANK EVRYONE FROM THE BOTTOM OF MY HEART FOR THE KIND WORDS AND SUPPORT THAT HAS BEEN GIVEN TO US SINCE WE LOST SCOTT!!
