Emma Tucker's Endoscopic Third Ventriculostomy
Emma Tucker underwent an endoscopic third ventriculostomy (ETV) when she was six months old.
Now, 12 months on, her mother Sue talks openly to Link about the experience.
“Emma's hydrocephalus was diagnosed after her routine six week check when the circumference of her head was measured and it was found that her head was growing too quickly.
We were referred to our local hospital where Emma had an ultra sound scan and it was discovered that she had hydrocephalus.
It was at this stage that I contacted ASBAH and learned about the possible causes of the hydrocephalus, and the treatments which were available.
Emma then had an MRI scan at the neurosurgical hospital, where we learned that ETV would be the best procedure for her. Because I had some knowledge of this, I felt much happier about the operation.
We took Emma into hospital on the morning of the ETV, and although I had felt calm until then, it was horrendous, so frightening to see my tiny, smiling baby taken to theatre.
The actual operation thankfully only took about an hour, and, looking back, it seems like a blur. We were allowed up to see her in the recovery room immediately afterwards, and it was wonderful to hear her cry and know that she had come round from the anaesthetic.
I think the biggest shock for me after the operation was the fact that so much of her hair had been shaved away at the front of her head. There was also a small bump, about the size of a 2p, where a reservoir had been implanted. That was something I wasn't expecting.*
Emma was sick initially, but she recovered very quickly from the operation. Her head was measured before she was discharged from hospital.
We took Emma home on the fourth day, and after that we saw our health visitor every week to have her head measured.
Emma still has regular health checks, with her head being measured once a month. At the moment her head is growing at the normal rate, but if it suddenly begins to grow too fast, our neurosurgeon can insert a needle into the reservoir at the front of Emma's head to measure the pressure.
We know that it is possible that tissue could grow and block the hole created by the ETV, but the procedure can be repeated two more times.
I think what helped me to cope was having knowledge of the procedures. If I have information I can prepare myself mentally and deal with things more rationally.
Now, of course, Emma's hair has grown back and at a glance you would never know she'd had the operation.”
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