“ Congential disease which affects the large intestine. „
I was pregnant with my son and because of previous bad pregnancies/births I had a planned c section @ 37 weeks. I had quite a plain sailing pregnancy this time so I was really positive that things had gone right, thrid time lucky I thought...I was wrong!
The day after he was born I was feeding him and he just kept crying and wouldnt take his milk, he hadnt pooed and was vomiting, his belly also seemed distended.
The nurses at Milton Keynes hospital were concerned and got in touch with John Radcliffe hospital in Oxford.
It turned out our son had Hirschprungs disease which is a disease that affects the large intestine.
I had never heard of this so was totally in the dark, we was told only 1 in 5000 babies get this condition.
My son was transferred to Oxford hospital where we was told they had to do some biopsys to confirm this disease and he would also need to have an operation to form a stoma (where a part of the intestine is pulled through the stomach and he poo's into a stoma bag).
here is some general information to understand what Hirschprungs disease is:
Hirschsprung's disease is a blockage of the large intestine due to improper muscle movement in the bowel. It is a congenital condition, which means it is present from birth.
Causes, incidence, and risk factors
Muscle contractions in the gut help digested materials move through the intestine. This is called peristalsis. Nerves in between the muscle layers trigger the contractions.
In Hirschsprung's disease, the nerves are missing from a part of the bowel. Areas without such nerves cannot push material through. This causes a blockage. Intestinal contents build up behind the blockage, causing the bowel and abdomen to become swollen.
Hirschsprung's disease causes about 25% of all newborn intestinal blockages. It occurs five times more often in males than in females. Hirschsprung's disease is sometimes associated with other inherited or congenital conditions, such as Down syndrome.
so we was really worried at this stage that our son would have to live with a stoma therefore making him different to most other children and susectable to bullying, as silly as it sounds it is a cruel world unfortunatly.
So my son had an operation to form a stoma and we were sent home to care with him with this condition we knew nothing about.
A couple of months later were told he could have a reversal which ment get rid of the stoma and pull the intestine down that did work and in a way connect it back up so he could poo normally. we were delighted.
the operation came and went well and we were pleased. however 2 weeks later I remember we were at the park on a lovely sunny evening and our son wouldnt drink his milk, we thought he was ok but later that evening he was sick and his belly blew up and was huge.
We took no chances and took him to Milton Keynes hospital and he was later transferred back to oxford hospital where they thought he had entercollitis ( serious infection of the gut) he was given antibiotics and washouts to do.
One night during his stay (the one night we had to go home) they called us and said our son had had a collapse and couldnt breathe properly and is really poorly so was put in intensive care. We were then told they needed to re reverse his reversal and perforn another stoma but in another place as he wasnt getting better. we went there ASAP and he had yet another operation.
following that we then went home caring for his stoma which is now just as routine as changing a nappy, all he seemed to do was scream, i mean i know babies do scream but it then turned out he had a heart problem (coactation of the aorta) which was missed at the hospital and was why he always screamed due to high blood pressure. he went to southampton for heart surgery.
last week he was due to have a mini pull through to widen his sphinter as it is to tight. unfortunatly instead he got a tummy bug and was really ill and admitted into oxford hospital for a week.
He is now home and is due to have his operation some time soon.
It has been a long struggle and he has had 4 operations with at least 2 more to come and he is only 8 months old. We have now come to terms with the fact that he may have a stoma for life and so be it if he does. at least he is fit and well and alive.
he also has a fistualla which is caused by the disease that causes a connection between loops of intestine, which normally would be close to each other, but separate.
the hard thing we have just learnt is that because he has an illostomy (stoma) whenever he gets a simple tummy bug we can all self cure and get over natuarlly our son will be hospitalised because like last week he gets dyhydrated so quickly he needs fluids through a drip and quick. within hours he looked like he wasnt quite with us and in and out of conciouss.
so thats our life with our son with hirschprungs disease.