West Sussex toddler spent second birthday in induced coma after rare malformation discovered

The parents of a toddler who was diagnosed with a rare malformation have been told by doctors their daughter is ‘very lucky’ to be alive.

Mark Preston – from Wick, Littlehampton – said his daughter Phoebe started having seizures in November 2023.

“This was put down to epilepsy and treated with medication,” Mark said. “The seizures continued on and off and by February she was become more and more unwell with large veins above her eyes visible, rubbing her head and eyes, putting her head down, wanting to lay down all the time, crying and off of her food.

"She had a CT scan and was initially diagnosed at Worthing with a brain tumour and sent across to Southampton.

"Southampton conducted an MRI scan and found that in fact she didn’t have a brain tumour but a very rare blood vessel malformation called Vein Of Galen Malformation.

"The Vein Of Galen is in a deep area of the brain called the pineal gland. The malformation is basically that the blood vessels attached to the vein had no capillaries, causing the Galen vein and other veins in her head to become very large and causing severe inter cranial pressure.

"Most cases of Vein Of Galen Malformation are detected in newborns so her case had become very severe.”

Phoebe needed to be transferred to Great Ormond Street Hospital as soon as possible for embolisation – a ‘high risk procedure but essential for survival’.

Whilst transport was being arranged, Phoebe had a serious bleed on the brain where blood vessels haemorrhaged ‘due to the pressure’.

"She had to have immediate life-saving treatment in the form of a decompressive craniotomy which is where they remove a section of the skull to relieve pressure and swelling to the brain,” Mark said.

Phoebe was transported to the children’s hospital in an induced coma before having a successful embolisation procedure.

The toddler spent two weeks under ‘neuro-protected conditions’ before being gradually brought round and then transferred back to Southampton for cranioplasty – which is where they replace the section of the skull that was removed.

Phoebe would then undergo rehabilitation, physio, recovery and to ‘relearn how to move her arms and legs’.

Mark said: “She is starting to relearn to move limbs and has eaten a little yogurt. Basically everything she could do has been forgotten so the rehabilitation will be a long process.

"It is unknown how much ability will return to her at this stage and how much of the brain injury will correct itself in time.

"It’s been quite horrific for all of us. We were told to expect the worst several times in the first two weeks and we are very lucky she has survived.”

Today (Monday, March 25) marks 37 days since Phoebe was first taken to A&E.

In that time, Mark set up a GoFundMe page to help support his family through their horrendous ordeal.

“I am unable to work and therefore am currently not getting paid,” Mark said. “I work for a small care company supporting adults with learning disabilities, physical disabilities and complex health needs. My wife Juliet is a family support worker but also of course not working currently.

“Phoebe has just turned two. She spent her second birthday in an induced coma at Great Ormond Street. We also have Rufus to look after who is four and so is also of pre-school age.

“The GoFundMe is enabling us to be able to support her through what has happened and with her recovery. We may also need specialist equipment going forward depending on how much brain injury is permanent.

“Without the fundraising we wouldn’t currently be able to pay our mortgage, bills and so on.”

So far, more than £11,000 has been raised.

Mark added: “We have been amazed at people’s generosity but her journey of recovery will be a long road yet so I need to keep raising funds to support my family during this difficult time. I won’t be able to return to work for quite a while.”

If you would like to make a donation, please visit gofundme.com/f/Phoebe-Rehabilitation-Recovery.

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