BiographyRuby was born on April 6th 2007. Antenatally they had suspected that she had a huge ovarian cyst in her tummy, but once born we realised thats was not the case. We spent a lovely first day together with no problems, but doctors became concerned when she didn't pass her first bowel movement. When she was two days old she started vomiting bile and this was the first of many experiences with the green stuff! She was rushed off to SCBU and underwent a huge amount of tests and was placed on a TPN. It was at her first x-ray that they saw that her bladder was 10 times the size of a normal baby bladder! Oh dear. It was drained straight away and a permanent catheter put through her tummy, just under her belly button. They believed that the initial blockage was a one off and after 2 weeks on TPN she started to take milk and we were sent home! getting used to draining the catheter was strange and she got lots of UTI's, but we really enjoyed having her at home.
Then when she was 12 weeks old she just stopped pooing. She went 5 days, had one, then 6 days. Hospital said she was constipated. We were under the renal team because of the implications of her bladder on her kidnyes and maybe they missed the signs and connections of CIPO with mega bladder. She was admitted with vomiting bile, dehydration and distension 8 times before we were referred to a gastroenterologist. They still thought it was constipation! I think they thought I was assuming the worst, but I'm not silly, I had researched it properly. As soon as the new doctor looked at her history, her notes and did a physical examination, she said that yes it could be pseudo. She would consult with GOSH. They advised biopsies. The first biopsy to rule out Hirschsprungs was inconclusive, so she had more detailed ones and they perforated her bowel twice. They ruled out Hirschsprungs. She recovered well and we were sent home again.
it kept happenning though, it seems there was nothing we could do to stop her from blocking up. They kept insisting that because she could tolerate food well and could do most poos herself she should only have an ileostomy as a last resort.
Ruby is nearly 3 years old now and things are very much the same. the last 3 years have been incredibly difficult and we have spent half of it in hospital. it is also difficult to see your child going through so much pain. She has good periods and bad periods and it is totally random so we can't plan anything in advance. We have finally been referred to GOSH where they have a department that specialises in motility disorders and have lots of experience with CIPO. They have done lots of invasive tests and confirmed the worse - that Ruby has CIPO and have advised us that she should have an ileostomy and a G-tube. There is a 50% chance that this may work. It is scary having a stoma, but like we got used to the supra pubic catheter, I'm sure this would be the same.
Ruby is a truly amazing child. She is super-intelligent for her age. She is strong, caring, kind and loving. She has dealt with this condition since birth and unfortunetly thinks this is normal life, The pain, the procedures - she is used to them. My poor angel deserves some time off! Hopefully, this surgery will make her life easier, at least give us some more time at home together.
Written by Lucy (Ruby's mum)
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