Understanding, beating Hydrocephalus: a survivor’s tale

HYDROCEPHALUS is an insidious condition affecting as many as one in 500 babies born in Australia.

Translated directly from Latin it means “water on the brain” and occurs when excessive cerebrospinal fluid accumulates in the brain.

Up until now the main treatment has been to insert drains or “shunts” into the young patients’ heads.

The Fairfax group of newspaper has taken on the cause because there is little public awareness of the condition and not enough government funding for research.

Hydrocephalus survivor Melissa Cork of Narooma is now in her 30s and has led a productive life working as a receptionist in real estate offices and also in childcare.

She also volunteers for the VRA rescue squad and Rural Fire Service brigade.

Melissa agreed to answer a set of questions put to her by the Narooma News in an effort to raise awareness of the condition:

Question 1 - Were you diagnosed with the condition straight away?

I was born with a permanent disability – Spina Bifida. Due to the emergency and life-saving surgery that had to be performed on me at birth to reduce the damage from the Spina Bifida, the prognosis was that this would create pressure on the brain and would result in irreversible damage to the ventricles in the brain which, of course, results in Hydrocephalus (fluid on the brain). They apparently had to be daily head measurements and cat scans to watch for this, as they didn’t want to go in immediately to perform further surgery if it wasn’t necessary.

Question 2 - What kind of medical treatment did you receive? Did you get shunts?

Within five days of my birth I was returned to surgery where a peritoneal shunt was implanted. This is a device/one-way valve that allows the fluid that naturally builds up on the brain to be drained away and via a tube that empties into the upper stomach (peritoneal area).

Question 3 - What has the condition meant for you? What kinds of things have you had to overcome?

I spent the first three months of my life in the Intensive Care Unit in Canberra Hospital where the shunt had to be replaced as the first one blocked. This is an ongoing issue as it could block at any stage.

In reality I have had to have the shunt replace twice more. Also they can only put a short length of tubing in at birth and at about the age of 10 years you have to be readmitted into hospital to have a longer tube implanted. Since this age I have had no further surgeries to date on the shunt or to do with hydrocephalus, all further surgeries I had were based on Spina Bifida.

The ongoing issue is that you have to be alert for any symptoms of blockage. Certainly while as a small child my parents were always conscious of protecting my head as the shunt does present as a very conspicuous bump and does so for some years until the skull grows around it.

Childhood illnesses with temperatures and headaches could be often confused for symptoms of a blockage. You are possibly more light sensitive than the average person, so sunglasses are essential. Whenever I have had subsequent surgeries for other aspects of Spina Bifida, the doctors have had to be made aware of my stunt so that precautions and counter infection measures are taken.

Being that it was a ‘side effect’ of Spina Bifida it is hard to say whether my hand/eye coordination skills are impaired due to that or Hydrocephalus. I was monitored constantly both medically and at school by counsellors. I mostly learnt through rote. I was encouraged to read all the time and still enjoy reading.

Question 4 - Do you think enough people know about hydrocephalus?

No. This condition can happen for any number of reasons. Mostly during childhood from high fevers and illnesses causing convulsions, including brain traumas.

Question 5 - Would you like to see more funding for research?

Of course.  I know part of the funds raised for Spina Bifida research goes to the study of Hydrocephalus and better ways of treating this.  My mother at one stage, when I was about 9 years old took me to the old Children’s Hospital at Camperdown in Sydney to participate in a brain injury clinical assessment by a panel of specialists.  This was part of the research they were doing at the time on children with Hydrocephalus.

Question 6 - Do you have any positive message for families experiencing the condition?

The earlier diagnosis and the earlier intervention that is carried out the better. It isn’t the end of the world and you can live with it so long as it is monitored. Initially, yes the surgery is very invasive and very serious, but once the healing process is under way and with love and support of family and friends life can be normal.

Smartphone
Tablet - Narrow
Tablet - Wide
Desktop