Mum’s heartbreak as daughter’s incurable condition could have been prevented by ‘the right treatment’ – Mirror.co.uk

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.

The prognosis, however, and the "horrendous impact" of the hydrocephalus on the family as a whole prompted Bethan and David to get in touch with a neurosurgeon in Boston - who revealed Lydia was given the wrong treatment.

"Our consultant in Swansea had Lydia airlifted to Alderhey hospital in Liverpool in July after Lydia had suffered with mismanaged hydrocephalus since December," Bethan says.

"They managed to stabilise her and correct a lot of Cardiff's mistakes.

However, because she had been left so poorly for so long Lydia had four cardiac arrests in the space of a week leading in significant cerebral palsy brain damage.

"If she'd been given the correct treatment from birth we could have a very different little girl on our hands."

Given there is no cure, Lydia's hydrocephalus is now managed by a shunt, which Bethan describes as "a piece of plumbing from the brain that drains extra fluid build up into either the stomach or the heart."

Miraculously, Lydia has survived ten neurosurgeries for shunts.

"The last time the shunt was improved was in the 1960s when Roald Dahl got involved to patent one," Bethan points out.

"Roald Dahl's son developed hydrocephalus after being hit by a car."

Since becoming Lydia's full-time carer, Bethan's heartache has been added to by the cruel and judgemental comments she receives when she is out with Lydia.

"We have had a serious amount of unkind comments about Lydia and her head. Most bad comments are made in supermarkets for some reason.

"If they knew the half of what its taken to get Lydia to the supermarket they wouldn't pass remarks."

Upsettingly, Bethan also adds how many comments have come from members of the medical community.

It's these comments, as well as how children with rare conditions which affect their appearance are exploited online which motivate Bethan to raise awareness.

"Myself and Dave feel passionately to educate others on hydrocephalus so others have an understanding and wont feel the need to pass judgement.

The couple are now urgently raising money to take Lydia to Boston where she can be properly reviewed the the neurosurgeons.

"We've been told that in the first two to four years the brain can grow and make huge U-turns, so this time is crucial for the brain development and input.

"We were told to give up on her numerous amounts of time. But we can't just sit on our hands."

Text LYDI59 5 to 70070 to help Bethan and David with their fundraising, or find out more about their campaign here .

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Mum's heartbreak as daughter's incurable condition could have been prevented by 'the right treatment' - Mirror.co.uk