Text Box: My Life

Text Box: ELLIOTT PAUL DOYLE BORN 11 APRIL 2007 3:00AM MUM - DANIELLE DAD - LEE Elliott was born in Ormskirk Hospital weighing 4lb 8oz. It all happened very quickly 6 hrs in total! He was taken from us straight away and was given oxygen, half an hour later the nurses brought him back. Elliott had a few problems feeding at the start, but the nurses soon got him to take his feeds. From about 6 weeks old Elliott was starting to vomit after most of his bottles, and used to cry a lot. We took him to Alder Hey Hospital and they told us to try Infant Gaviscon. This seemed to work and the doctors said he had reflux.   As Elliott was so small when he was first born the hospital was keeping a check on his weight progress. He was not gaining any weight and was way under the centile chart. On one of his routine checks they found a heart murmur. Whilst at the heart clinic in Alder Hey the nurse said Elliott had high blood pressure. In July 2006 we found lumps in his groin so we took him the hospital again and they said it was a hernia. The doctors arranged for Elliott to be taken in to have the hernia removed. A week before his operation Dr Holt rang me at home and asked if Elliott could come in a few days before his operation just to check his blood pressure was ok for the operation. Whilst he was in hospital the doctors done lots of test on him, which revealed lots of problems.   Scans and blood tests showed that he had calcium in the kidneys; thicken of the heart muscles, two heart murmurs, lactic acid & microchephly. We couldn’t believe it, our baby was going in for a simple hernia repair and all of these problems were appearing. Elliott ended up staying in the hospital the whole week before his operation, which on the day went well. August and September came and went with no problems. Elliott started nursery and seemed to be coming on smashing. In October he was rushed into hospital with suspected meningitis. He had a lumber puncture and all other tests, which all come back good and it turned out he was totally dehydrated. Around November time he started picking up viruses. He was admitted into hospital twice in November both times with gastro-enteritis and Rota virus. He was referred to a lovely consultant, Dr Verhouff who was looking into all the problems he was having, she referred Elliott to have a muscle biopsy.     February this year his appointment came around, we had him at the hospital for 8:00am as we were told to. 3:00pm came and the nurse called for Elliott to go down to the theatre. The longest hour and half passed and the nurse brought him back to the ward. He had the muscle took from his left leg which has left him with quite a big scare. The nurse came and told us that the operation went well then a Dr Andrew Morris came to speak to us. He was explaining to us why they have done the operation and what they looking for. He was explaining to us about a mitochondria disease. We didn’t really understand it all sounded so complicated. He told us that the results would take 6 weeks to come back so he can make a definite diagnosis. 10 weeks later we had an appointment to see Dr Morris, where he told us that what he suspected   Elliott then had an appointment to go for an MRI scan. He went into hospital on a day ward, got took down to the anaesthetic room quite early in the morning. One hour passed and he was back on the ward, we were told that the results would be sent to Dr Morris and see him on the next appointment which was 25th April. The appointment came around and the results showed that Elliott had damage to his brain stem, which is Leigh’s Disease. We could not believe that the doctor was given us more bad news about our boy!! Dr Morris wanted Elliott to be admitted into hospital the following day to have an N.G tube fitted, run few more tests and to keep a close eye on him. My mum explained that we were going to Lourdes on Friday for the weekend. Dr Morris told us to go and have a nice time and that the tests could wait a few more days.   Off we set to Lourdes which was a really fascinating place, every morning there was a mass said for Elliott which was overwhelming. Everyone here was so lovely and the different events going on each day was unimaginable.   When we got back on the Monday, Elliott was admitted in to hospital on the Tuesday, where he had lots of tests. The tube was fitted, up his nose and down in to his tummy. This was not nice, not only did it make him look 100 times more ill, he was very miserable with it. Although it must have been very irritating for Elliott to have this tube in his nose constantly he was very good with it. He pulled it out only twice, whilst we was on the ward Dr Morris came and told us that the Leigh’s Disease would end Elliott’s life; we were distraught at what we had just been told. Elliott was taken into hospital to have brain wave scans which all come back normal. Seven weeks later his appointment came through for his gastrostamy to be fitted. Again the operation went really well.   Although Elliott still sometimes vomits after his feeds he is a lot happier in himself since having the gastrostomy done. He is currently been fed over night on a pump which has reduced his vomiting.

Text Box: