Mr. Peter Landy:

I thank the joint committee for this opportunity to speak before it. Hydrocephalus literally means water on the brain. It is a condition in which water is retained in the brain and, as it cannot escape, it therefore puts pressure on the brain and cause some brain damage. Although it can be treated with the insertion of a shunt, unfortunately quite an amount of damage already can have been done by the time it is diagnosed. If members will give me the opportunity, I wish to tell them my story and that of my daughter, Hannah. She is 14 years of age and was born in 1998 with hydrocephalus but thankfully not with spina bifida. She had what is called a Dandy-Walker cyst, which is a cyst at the base of the brain that blocked the fluid from getting out, which was the problem. Three days after birth, she had a shunt inserted in Crumlin hospital, as it was necessary to do it very quickly. She lived with her shunt quite successfully for ten years without great problems or major issues. I joined the organisation at some time during the interim and became more aware of, and got more information on, the condition of hydrocephalus.

However, one day in 2008, Hannah became ill. She was not feeling well, as often is the case with children, and we did not panic too much. However, at about noon that day we decided she was not getting any better and that it would be best to bring her to our local accident and emergency unit. On presenting there, luckily the staff there reacted quickly and sent her for a scan, at which it was established there was a blockage in the shunt and the fluid was building inside her head. Within four hours of having arrived at our local accident and emergency unit, my daughter was transferred to Crumlin hospital and by 4 p.m., we were in an emergency operation situation there. It was necessary to bring in the crash team because Hannah literally had left us. Luckily, she returned to us and was rushed into theatre where she was operated on. In a procedure that took approximately two and a half hours, the operating team righted the problem and got the shunt to work again. Unfortunately, more damage had been done by then and Hannah suffered paralysis on her left side. If members are familiar with anyone who has suffered a stroke, the effect was very similar to that. She had paralysis on her left side, her left hand and left leg became very weak and all that went with that.

This experience was a major trauma for us. It took approximately four days before she came out of the anaesthetic and we literally were traumatised by the entire event. She remained in Crumlin hospital for approximately seven weeks, where ultimately she was undergoing occupational therapy and physiotherapy services, as well as availing of all sorts of other hospital services. As the hospital had done all it could for her by then, the only thing to do was to move her out to the National Rehabilitation Hospital in Dún Laoghaire, where she spent a further eight weeks in rehabilitation. This happened on 8 August and we eventually got her home on 23 December 2008. Hannah has had further issues since then. In 2010, she experienced another blockage and she ended up in Beaumont Hospital, where that was relieved. Thankfully, Hannah is doing well. She is attending a special school, is learning, and is doing all the things. It is like Ms Hazel McGeough's comment about her client in that she has all the aspirations to be a model and to be everything little girls want to be when she grows up. Please God, perhaps someday she will achieve that goal.

As a family, we could not have survived without the support we received from Spinal Bifida Hydrocephalus Ireland, SBHI. I have become much more involved in SBHI in the intervening years and as Mr. George Kennedy already has noted, I now am proud to be vice chairman of the national organisation. That is my story and that is what hydrocephalus can do. It literally is a life and death situation. When the doctor emerged from the operation that night in Crumlin, he told us the surgical team had saved Hannah by a hair's breadth. That brings it home to one how close one can be. When I left my house this morning, my daughter was fine but by this evening, the whole situation could change. I again thank members were listening and hand them back to Mr. George Kennedy.