Toddler with rare condition is ‘very lucky’ to be alive
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.
“Thiswasputdowntoepilepsyandtreatedwithmedication,” Marksaid.“theseizurescontinued 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,wantingtolaydownallthe 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.
"Southamptonconductedan 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 calledthepinealgland.themalformation is basically that the blood vessels attached to the vein had no capillaries, causing the Galen vein and other veins inherheadtobecomeverylarge 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 procedurebutessentialforsurvival’.
Whilst transport was being arranged, Phoebe had a serious bleed on the brain where blood vesselshaemorrhaged‘duetothe 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 successfulembolisationprocedure. Shespenttwoweeksunder‘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’.
Visitgofundme.com/f/phoebe-rehabilitation-recovery.