What's next for my child?..... cont
If your child still has problems controlling their bowel movements and continues to have accidents when older, then an ACE or Malone may be necessary. This is where a tube is inserted from the tummy, to usually, the appendix and then into the bowel. This then allows the bowel to be cleaned with saline, from the top down, on a nightly basis. This may sound unpleasant but during this problem period the child is usually clean and therefore does not feel socially excluded. Children usually do not find this a problem and can look after their ACE from an early age, some as young as 4 or 5. We do have a leaflet on the ACE procedure, you can find it on the pamphlets page.
There are another two smaller groups of Hirschsprung's children who have total intestinal Hirschsprung's and Total Colon Hirschsprung's. In Total Intestinal HD, some of these children do not respond to treatment and sometimes their option is a multi-organ transplant. This is a very new form of transplant and, therefore, has great dangers attached to it and therefore will only be performed as a last resort. Total Colon Hirschsprung's occurs in around 5% of HD children and is normally treated with an ileostomy and when the child is older then the pull through is performed. This can vary depending on the consultant involved and what they feel is in the best interests of the child.
My child is not a baby but still has bowel problems?
In some instances it can be very hard to diagnose HD. It is easier to prove that a child has Hirschsprung's instead of proving it does not. The biopsy taken may have shown ganglion cells but not enough biopsies were taken to show the areas without cells. The doctor may have thought that the problem was the child withholding the stool, which does happen.
If after this length of time, your child is still having problems then they must be checked by a specialist consultant. It has been known for adults, later on in their lives, to be diagnosed with Hirschsprung's but, thank goodness, as diagnostic techniques and knowledge of Hirschsprung's has improved. This makes late diagnosis rarer.
If your child is having bowel problems, the odds are it is not Hirschsprung's. Whatever the problem is, it must be fully investigate and diagnosed by a gastrointestinal specialist.