| Joshua was born on May 6, 2004 (three days overdue) by emergency C-section due to the cord being wrapped around his neck, causing his heart rate to go dangerously low. He weighted 7lb 6oz or 3.350kg. Joshua scored 8-9 on his APGAR test and appeared to be a normal healthy child. I started breast feeding him straight away. Whilst in hospital, we noticed Joshua made a loud noise when he breathed and the midwives assured us that he just needed to clear his nose of mucous. Once home, Joshua started to go downhill. First he brought up some horrible green mucous, then he started to refuse to feed so we contacted the midwives for help. They came out to help me feed Joshua for a day then the next morning his breathing had got worse. He looked like he was straining for every breath and he hadn�t had any wet or dirty nappies for at least 24 hours. He still wasn�t feeding so we called the midwife out again and this time she looked worried, so she tried him on formula milk. When he wouldn�t take that he was rushed straight to the special care baby unit at Torbay Hospital. By this time he was limp and lifeless. Doctors worked hard trying to find out what was wrong with him and came to the conclusion that he had something wrapped around his wind pipe. But a later blood test revealed Joshua�s blood ammonias were abnormally high (in 300�s), so he was rushed to Bristol Children�s Hospital. When we got there Joshua was already in the intensive care unit, so we went straight to his side where we found him hooked up to a lot of machines with lots of fluids being pumped into him. Doctors at Bristol Hospital did lots of tests on him including a lumbar puncture. A few days later we were told they thought Joshua had Citrullinemia and later said it was ASA. This was later confirmed by a skin biopsy. We stayed at Bristol Children�s Hospital for two weeks whilst they sorted Joshua out and taught us how to treat his condition at home. Joshua is 18 months now and is seen by a consultant, dietitian and a development consultant at Torbay, a consultant at Bristol once a year, and the specialist Metabolic Team at Guy�s twice a year. Joshua is just going through development and language therapist to see what help he needs. Joshua has had six short stays at hospital this year but is doing well. He has a healthy appetite. He eats all his 14 grams of protein a day and has free food on top of that. Joshua has not had a really high ammonia count since birth. It has only reached about 80 when he has been hospitalized this year due to colds. We are very glad that we were blessed with Joshua and see him as a special gift that we have to keep safe and well. Thank you for taking the time to read our story. It�s nice to know we aren�t alone and there are people that understand what we are going through. |
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| Joshua Sutton |
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| Joshua's Information as of November 2005 |
| Parents: Anne & Vic Sutton Protein Allowance: 14 grams E-mail: [email protected] Liver Status: Not Known Hometown: Paignton, Devon, England Birthday: 6th May 2004 Other Diagnosis: Febrile Convulsions Age at Diagnosis: 10 days Weight: 10.12 KG Siblings: None Height: 78 CM Meds: Sodium Benzoate, Arginine, Seravit, Tegretol Developmental Status: About 4-6 months delayed |
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| Vic, Anne and Joshua Sutton |
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| Joshua' first birthday |