Hirschsprungs Family Connections

Rhys, our second child was born by c section after a normal pregnancy in August 2009, at 36 hours old we noticed he still hadn't passed his meconium and was bringing up green sick,a scan revealed he had a blockage so remained in SCBU in Frimley until a retrieval team from Southampton came to take him to PICU. 

 

It was then we met Mr Stanton and team for the first time...after a nervous few days biopsies revealed Rhys had HD and would need a Duhamel pull through op, this was scheduled for 14th August 2009, he was only 9 days old.  Recovery was slow and we spent approximately 2.5 weeks on the neonatal unit before moving to transitional care. We went home when Rhys was almost 4 weeks old and kept having follow up appointments.

 

Rhys had a fairly standard 3 years with a few hospital stays but nothing major until 6th March 2013 when he developed a severe life threatening bout of enterocolitis. This was most definitely the hardest thing we have ever dealt with. Rhys woke through the night vomiting poo through his mouth and nose and was in a bad way, at Frimley he went to X-ray and seemed to perk up asking for a fruit shoot and hula hoops, unfortunately within seconds his whole body went limp and he was taken to resus, his body went in to septic shock and there was a large team working to save him, to whom I will be eternally grateful. No one believed he would make the day but miraculously he did. He was transferred to PICU in Southampton where he was ventilated for 5 days, this passed in a blur.

 

When Rhys was woken up his whole left said was limp and it became apparant later he had had a stroke due to his body reacting so badly to the enterocolitis. It was decided to form an ielostomy. Life settled down again until December 2013 when he prolapsed and was vomiting and again in a bad way, we stayed in hospital and were discharged just before Christmas Day. He continued to be hospitalised every 2-3 weeks until April 2014, we then had a whole year which was really good and because we were doing so well we decided to keep his ielostomy.  However this soon changed and we have now had 3 prolapses in 4 weeks, each time it effects him quite badly. We have now just had our letter to confirm Rhys will be having a reversal on the 20th may so we are all a little nervous at the moment and wondering what the future holds for Rhys,hopefully good luck is coming our way... Rhys is an amazing little boy and always has a smile on his face and is an inspiration to all who meet him.

 

Rhys had his reversal as planned on the 20th May 2015, we stayed in hospital for a few days and all appeared to be well however when we got home Rhys started vomitting green and couldn't pass any bowel movement even with Senna or suppositories so we were admitted to Southampton again. He was taken to X Ray and it was revealed he had a blockage so had to go to theatre to remove this, we remained in hospital and again after a few days we went home, the same pattern emerged he started vomitting green again and was in apsolute agony so we were admitted to hospital again and again he went to theatre to remove a blockage. This felt like a never ending cycle and Rhys was in so much pain and could barely do a thing and he wasn't keen to eat or drink. On the 17th June Rhys had another operation, this time for an end ileostomy..the op went well and Rhys went home after 5 days. Life since then has been a little up and down, his scar kept popping and in the end had to be cauterised and he has had lots of problems prolapsing. Rhys misses a lot of school and is behind massively but one thing he has always got is a huge smile on his face. Our last admission was Christmas week when we were visiting family in Cardiff, he was vomitting green again and had really bad stomach pains but thankfully it turned out to be a gastro bug... Life is certainly a journey and extremely testing at times but I wouldn't change Rhys for the world, my little superstar