Little Lydia has hydrocephalus, but her mum explains – “she might have been a very different little girl”
On New Year’s Eve 2015, Bethan Germon was told her two-month-old daughter had only hours to live.
Fourteen months and “numerous miracles” later, little Lydia is still here.
However, Bethan, from Swansea, has had to deflect countless unkind comments about her daughter, and has had to push on despite being told to “give up” on Lydia on several occasions.
Lydia has hydrocephalus, for which there is no known cure.
Something which is especially painful for the family is that this Lydia’s condition might have been avoided all together.
“People presume you are born with hydrocephalus when in fact you can develop it at any time,” the mum-of-two explains.
Lydia was born with a complex condition called Dandy-Walker syndrome, which is a congenital brain malformation involving the area at the back of the brain that controls movement and the fluid filled spaces around it.
Other than that, however, Bethan points out she was “born healthy.”
When she was a week old, she was sent for neurosurgery in Cardiff, which marked the start of Lydia’s deteoriation.
Bethan continues: “The neurosurgery wasn’t the right one for her and caused hydrocephalus, which is water on the brain.
“Her head leaked cerebral spinal fluid for weeks and she was left in hospital hoping it would heal by a pressure bandage and shunt revisions.
“It was only then that a registrar in Cardiff operated to help her wound to heal.”
Unfortunately, the wound did not heal, and Lydia caught both meningitis and sepsis.
Bethan and her husband David then had to face the heartbreaking task of taking their youngest daughter home for end-of-life palliative care.
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