On the outside Aled Griffiths looks like any 11 year old boy, cheeky, full of confidence and with a lovely happy smile. The only indication that there may be problems is when you see his hands. Aled was born in 2003 with VACTERL association. Some of his anomalies include a hole in the heart, imperforate anus, one kidney, spinal defects as well as the hand and arm issues. He spent the first eight weeks of his life in Southampton general hospital where he had a colostomy formed at two days old followed by open heart surgery at six weeks. As Aled only weighed 4lb 6oz the stoma bag was huge in comparison to his little body.
The next eighteen months were spent visiting hospitals in Plymouth, Southampton, Bristol, and Birmingham to see the various specialists, as well as occupational therapists and physiotherapists that Aled required on a regular basis. It was quite a tiring and emotional time for all the family as the appointments were almost every other day, but we got through it and Aled was thriving with all the attention that he was receiving.
Aled had his colostomy reversed at 11 months old, at which point we hoped that things would be okay with his bowels, but over the next 18 months we realised that things weren't improving. This was confirmed whenever he had an x-ray as it would show an impacted colon. Also from an early age it was noted that he had trouble with his bladder. Subsequent tests showed that he had a neuropathic bladder with a capacity of only 100ml. Aled’s bowel issues were a concern at first, especially with the constant dirty nappies after the reversal. However, once we found out about washouts and started to do them it all started to change. The panic about him not being clean around his friends soon disappeared.
All that was needed now was a way to make it easier for Aled to do them on his own. We hoped that the Peristeen anal irrigation system would allow this but, although the system was great to use, Aled's hands meant that assistance would be needed. At that point his consultant suggested the ACE. So at the age of seven, Aled was admitted into Bristol children's hospital for an operation known as the ACE procedure. At the same time he was to have a bladder augmentation and a Mitrofanoff procedure. However, this was complicated due to adhesions from previous bowel surgery. These adhesions meant an emergency trip back to theatre for a seven and a half hour operation.
He was finally allowed home after two months, but it would be another two months before he could go back to school. The ACE was exactly what he needed, within 12 months he was fully independent with all his needs.
At the age of eight, Aled was invited by Coloplast to speak at a continence nurse study day, to talk about the Peristeen anal irrigation system which he had been using prior to having an ACE. Aled has always been an outgoing person, talking to anyone that would listen to him, so this event really suited him, especially when he was declared guest of honour. From there he did several presentations to small groups of medical professionals and also at a conference in the USA for people affected by VACTERL association. In October 2013, when he was ten Aled was invited to speak at the Association of Stoma Care Nurses (ASCN) conference at the Celtic Manor Resort, Newport, South Wales. We were told it would be in front of 200 nurses. However, when we arrived at the conference it was soon evident that it would be to a much larger group, in fact it was to 600 people. Aled gave his presentation as if he had been presenting for years. He was calm, confident and engaging and at the end of his presentation he received a standing ovation, reportedly the only one given in ten years.
This conference was to be the start of new things for Aled. He was asked to become the Children's Ambassador for the Mitrofanoff Support group which he accepted and for which he is very proud. So now he spends some of his time sitting on committees advising on children's matters.
The rest of his time is split between talking at events and sailing, which he enjoys. He has recently completed the Royal Yachting Association (RYA) junior sailing scheme levels 1, 2 and 3. Having conduit stomas has really helped in Aled's independence. With a little bit of planning he can stay overnight with his friends without anyone being aware of his issues. A last praise for Aled is that even after all his time out of school he has continued to show that he has an academic ability. In September 2014, he took the 11 plus exam which is used as an entrance test to gain entry to the city's only boys’ school. He received the results on the 17th of October and cried as he read that he had gained a place at the school. The Colostomy Association has invited Aled to our 10th Anniversary Celebrations in July 2015. He has agreed to take part in the fashion show on the morning of Sunday 12th July and is really looking forward to it.
Medical Terms Explained ACE (Antegrade Colonic Enema) procedure An operation where the appendix (or a section of bowel) is brought out through the skin to form a very small conduit stoma. This forms a channel into the bowel which can be catheterised to introduce water and a stimulant to wash out the bowel. ACE is explained in more detail in Tidings 35 Page 57. Mitrofanoff procedure An operation where the appendix (or a small section of bowel) is used to create a conduit (channel) leading from the bladder and out through the skin. This forms a continent stoma which has to be catheterised to drain urine from the bladder. For more information: Visit: www.mitrofanoffsupport.org.uk Tel: 01202 937 530