My nephew, Benjamin, was diagnosed within weeks for birth, being hospitalised in intensive care the day after being born Dec 2014. This was a very stressful time for his parents. After several weeks he needed vital surgery of which we were thank full was successful. With the support of the hirschsprung's family connections in Southampton his parent's were helped to deal with the coming weeks of his stay in hospital and his return home to his siblings and continue to do so, many thanks to them.

What is hirschsprung's disease?

HD is a rare condition which affects the nerve cells (know as ganglion cells) of the bowel. It affects 1 in 5000 babies and is more common in boys than girls.

In HD the ganglion cells are missing from the bowel so the contents are pushed along until they reach the affected part of the bowel where the contents slows and a blockage occurs.

HD affects the rectum and a variable length of the large bowel above it. This length is usually only a short segment of bowel, but sometimes may affect the entire large intestine (colon).

Many babies with HD present at around three days of age having never had their bowels open. They may be reluctant to feed and may vomit a green fluid called bile, which would normally pa's through the bowel. However some children are not diagnosed with HD until much later, having passed meconium at birth. For these children and their families it is a battle to get a diagnosis.

Although surgery known as a 'pull though' procedure removes the part of bowel affected by HD is it not a cure and many children with HD suffer with long term problems, that can require medication, treatments and further surgery to help with these problems. These children can also develop a very serious infection called enterocolitis.

Enterocolitis is an infection of the large bowel and is a potentially very serious complication of HD. It is treated with antibiotics, regular bowel wash outs and some may result in having a stoma.