I am horrified at the experiences that some of you seem to be receiving.

I have a three year old who was diagnosed with SBO at birth.
Although nobody could tell us what would happen to her (we accepted that because every case is different, it would have to be "wait and see") we have received excellent care. She is given an MRI scan every six months and in between times, ultrasound, to establish what is happening with the tethering of the spinal cord and also to check for kidney damage (i.e. if waterworks aren't working properly).

So far she is doing well - fully mobile, no evidence of loss of sensation, she is even potty trained although this took a very long time - in short she is a completely normal child. So far we are very lucky. That said, there seems to be a vast difference in medical opinions. At the hospital where she was born, the neurosurgeon wanted to de-tether the spinal cord at 4 months, "routine practice", we were told. We then moved house and therefore hospital, where the neurosurgeon told us that she would only ever operate if it were really necessary. Although it is apparently a relatively straightforward surgical procedure, there are all the usual risks and complications and our surgeon feels that surgery should be avoided if at all possible.

It sounds as though some of you are having difficulty getting past your GP's. We were told by the neurosurgeons not to expect much understanding of the condition from our GP's and some have even admitted to us that they don't know much about it. Stand your ground and insist on a referral to a consultant neurosurgeon. Do whatever it takes. Holes, hair, sudden bladder problems, leg pains etc, are apparently a real giveaway of SBO so keep on until you see an expert.

Incidentally, if any of you mums blame yourselves for giving this to your babies (as I did), we have been told that it is not strongly hereditary although I would now have a slightly increased chance of having another baby with SBO, as would my daughter when she has children. I took folic acid throughout the pregnancy and beforehand. In short, it is apparently just one of those things.

I am sorry that so many of you are in pain and I hope you find somebody to help you. I am very intrigued by the methods of the late Belgian doctor and I shall ask our consultant next time I see her.