GP told mum her baby was 'just teething', a week later she was having emergency brain surgery

Stefani Thatcher is joining our GET-A-HEAD campaign alongside Harry's Hydrocephalus Awareness Trust to highlight the importance of head circumference measurements for babies.

Baby Elodie celebrating her 1st birthday, having recovered from surgery.
Author: Victoria GloverPublished 20th Sep 2023

A mother from Hertfordshire whose baby was diagnosed with a serious brain condition called hydrocephalus says a simple head measurement could have helped to diagnose her daughter sooner.

First-time mum Stefani Thatcher, from Ware, says the family's GP dismissed her concerns about eight-month-old Elodie; putting her unsettled symptoms down to teething. Just a week later, the baby girl was taken for emergency brain surgery to resolve an acute build-up of fluid on her brain.

Stefani said: "We were being told that it was probably just normal baby grumbles, developmental leaps or teething. As first time parents we believed what we were being told and we kept hold of that hope."

Hydrocephalus, also known as water on the brain, causes rapid growth of a baby's head and can be picked up during routine medical checks by measuring and plotting the size of an infant's skull on the growth chart within the Red Book. It often presents alongside other symptoms including, but not limited to: vomiting, irritability and sleepiness.

Stefani says after the 6-8 week well-baby check, several opportunities were missed to measure Elodie's head, which would have helped to identify the rapid growth sooner: "They did take her head circumference measurements in the first few weeks, but I didn't know why. Nobody mentioned the reason for that particular measurement and that information itself would have been useful to know. I could have chosen to do a few more checks myself, especially when she started showing some strange symptoms."

Elodie was eight and a half months when she was eventually diagnosed, just a matter of days after her mum had been reassured by a GP that nothing was wrong: "Had he taken her head measurement at that time, he would have seen that her head measurement was off the charts in the Red Book, which is something we're supposed to monitor. That alone would have been the moment to say - go to A&E now. She would have been relieved of quite a few weeks of very intense pain in her head."

Stefani is now joining our Get-A-Head campaign alongside Harry's Hydrocephalus Awareness Trust, which is highlighting the importance of head circumference measurements in a baby's first year and calling for an improved set of national guidelines that would standardise health care for babies across England.

An outline of the Get-A-Head campaign.

Following her family's experiences, Stefani now believes more information should be given to parents when they're expecting a baby, or before they leave hospital, to educate them on the reasons behind head circumference measurements: "It would have been something very quick to mention. We were told about baby's weight and length so it could have easily slotted into that section of information about the checks you'll have when your baby's here. "

Hydrocephalus is a life-threatening condition which affects approximately 1 in 700 babies. It involves a dangerous build-up of cerebrospinal fluid (CSF) in the skull which can cause brain damage and death, if left untreated.

There is no cure for hydrocephalus, but it can be successfully managed with the insertion of a device called a shunt, which sits in the brain and artificially redirects excess fluid to another part of the body; usually the abdominal cavity.

We believe if the demands of the Get-A-Head campaign were implemented by the government, it would help to prevent the late diagnosis of babies with life threatening conditions, like hydrocephalus.

Find out more here.

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