‘I burst into tears. I just wasn’t ready for someone to tell us my daughter needed brain surgery’: Doncaster mum’s shock at daughter’s deadly illness

To the doctors, it was amazing that the little girl in front of them was still alive – over five years after being born with a condition that could have killed her.

When Amy Dawson’s daughter Freya was born, she appeared to be a healthy baby. Her mum said her smile lit up a room.

As she grew older, she was a bit clumsy, and she was a bit behind in terms of some of her milestones, like learning to walk. 

The doctors were not sure that was wrong. At one point it was suggested she may have cerebral palsy, and then hypertension dyspraxia.

She began to struggle at school and started to become forgetful. Amy, from Broomhouse Lane, Balby,  was still concerned.

Then last July, a neurologist decided she should have an MRI scan.

The doctors found fluid on the brain and and a cyst, and referred Freya to a brain surgeon, with an appointment available in September.

Then things started to get worrying. When he examined Freya, the doctor was concerned enough to insist on operating within days. He saw Freya on September 13. She was in hospital by September 18, and she was in the operating theatre the following day.

Freya had hydrocephalus – water on the brain. Amy was told it was a condition that could have been fatal.

She said: “The surgeon was amazed it had not been fatal for Freya. We didn’t really have much time to process it. I burst into tears. I just wasn’t ready for someone to tell us my daughter needed brain surgery

“Freya was only meant to be in hospital for a couple of days, but she picked up an infection. She was in hospital for five days, and I slept in a chair next to her bedside, while she was hooked up to machines. Her dad, Nick, drove from Sheffield to Doncaster to look after the other four children.”

Symptoms of the illness usually include headaches, but Freya had not reported any headaches. But she has had headaches since the operation. She also has fewer smiles, said Amy, of her daughter who used to be famous for her beaming grin.

She has also started having seizures.

Her recovery was slow, and it was two months before she was back in school.

Six months on from her operation, Freya had to have a second operation, to monitor her the fluids in her brain.

Amy says it is very likely that Freya will need more operations. She is likely to need a shunt –  a thin tube  implanted in the brain to drain excess fluid to another part of the body, usually the tummy, from where it can absorbed into the bloodstream.

She may have to have weekly injections.

In the mean time, Freya now hates hospital. “She is going through the whole thing thinking, ‘why me’?,” said Amy. “She knew she was a bid different to the other children. She couldn’t run as fast, but she embraced it.

“No one is really 100 per cent sure why her behaviour has changed, and we have to go back to a neurologist. It is a long road, and she has to be monitored for seizures.

“She can’t go on trampolines or bouncy castles and she is sensitive to noise.

“It feels as though we can’t let her be an ordinary six year old girl.”

Charity support

Despite the challenges that Freya's illness has thrown up, there has been a constant source of help that has inspired mum Amy.

Since her first operation, she has drawn on help and support from the charity Shine, which helps people affected by hydrocephalus or spina bifida.

When Freya came out of hospital, Amy needed support – and it was to Shine she turned, on the advice of the nurses at Sheffield Children’s Hospital while she was on the ward.

“Freya become a member of Shine,” said Amy. “They told her she was part of a special group, and made her feel special about the condition she had. They are a small charity that a lot of people have not heard of. They have a membership of around 75,000.

“They have provided me with verbal support and information leaflets, and they have a woman who I’m constantly in touch with who has been amazing with advice. It has been a whole new thing, but they can give me counselling.

“They also do school visits to tell pupils about the illness and the signs. Freya’s school, Waverley, Primary, has been amazing. They told all the pupils about her and put in place plans to keep her safe. They have even brought our kids into school when we have had to go to hospital appointments.”

Amy has started raising money for Shine in gratitude for the help they have given her. So far she has raised over £1,500.

She has more planned, and hopes to raise £3,000

On June 16, she is going to take part in a skydive to raise cash for them. Before that, on Friday June 14, Freya’s school is holding a fundraising day.

After that, Amy is running a family fun day at the White Church’s church hall, in Balby. Saturday August 10 There will be games, stalls and raffles, face painting and a bouncy castle. It runs from 11am until 4pm. 

Log onto www.facebook.com/freyafundraising.dawson.1 to get involved with the charity fun day. Log onto https://www.justgiving.com/fundraising/amyisskydivingforshine?fbclid=IwAR2ar3BHAbfVk1iqcbmB8y0a-X1-O_xgDo_Hy_9zAbJkTJoaFUCl1Rxkkvs  to donate to the skydive on justgiving.com