Hello im new here so just wanted to run through our story.
Our beautiful son Christopher was born in november 2005 everything seemed fine except he hadnt passed his meconium, the nurses and midwife kept saying dont worry its fine if he doesnt for 48 hours, anyway later that night he semmed to have wind travelling up and down inside him and was vomitting green bile we told the nurse and again were made to feel stupid and it was nothing. When the paeds came to check him the next day i could tell something wasnt right and she said if he was sick again to call her, he was so i told the nurse to call her but she no you dont need to theres nothing wrong!!!! But i insisted she did, he was taken to the NICU where we were told they would run test for all types of things including HD we were in such shock!! After 4 days we were told he had HD but they suspected it was only the first 15cm, so the operation was set 6 days later. The day came and we were told that it should be about a 4 hour operation he may have a colostomy or may not............you can imagine what state we were in when he came out 14HOURS later with an ileostomy and to be told it was all the large and some of the small bowel that was affected. Anyway our strong little boy battled through and we were allowed to go home 4 a week later after some stoma training. It funny because at first we thought my goodness how are we going to cope but you do. We went back to have the stoma reversed at the end of feb 2006 and he did really well except the bottom rash and fungal rash but he was well. At christmas just got he got the dreaded enterocolitis band nearly died because a A&E doctor sent us home and his kidneys stopped working, but again our strong little boy pulled through and is doing well we were back in hospital about 4weeks ago he got dehydrated, but otherwise he's a happy healthy boy.
Sorry this turned out to be longer than i expected, but look forward to hear from you all
Christopher 16mth TCHD, UK