PARENTS

Untreated Condition Makes Three-Year-Old's Head Grow Three Times The Size Of An Adult's

24/07/2012 16:49 | Updated 22 May 2015
Hydrocephalus: Rare condition makes toddler's head grow three times the size of an adult's  Caters

Dilla Anargia Adilla, three, from Indonesia, was born with Hydrocephalus - a rare condition that causes her body to produce too much spinal fluid.

This excess fluid collects in the skull causing her head to grow at a fast rate. Ear to ear her head measures 100cm.

The rare condition is estimated to affect one in 500 babies, and although sometimes described as 'water on the brain', it is actually caused by a build up of cerebrospinal fluid.

Hydrocephalus develops when the normal flow and absorption of cerebrospinal fluid in the brain is hindered or blocked.

The condition can exist at birth or can develop as a child gets older. In Dilla's case, she was born with the condition, and it is thought the build up of fluid is due to an infection her mum Puspita developed during pregnancy. It can also be common in premature babies.

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Hydrocephalus is treatable in the UK through a two hour procedure, where a thin tube called a shunt is used to drain the excess fluid. Dilla's parents could not afford the treatment at birth, and now doctors are reluctant to operate due to the severity of her condition.

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Charity Cure Hydrocephalus estimates that out of 400,000 newborns born with the condition this year worldwide, 79 per cent will be born in the developing world.

Dilla cannot walk or talk and spends her days being cared for by her dad Azwar Anas, 31, mum Puspita, 28 and sister Fazira, seven.

"Ever since I was told by the doctors before her birth about her disabilities I have accepted it from the start," says Puspita. "But seeing Dilla in so much pain is obviously tearing me apart. It doesn't just affect me, it upsets everybody when we see her in pain.

"I don't know whether she will survive this illness because she needs special and intensive care. A doctor has told me that they can't operate on Dilla because she is also getting weaker. I can only accept the gift that God has given to me and my husband.

"I know that God sent Dilla to me to take care of her with all my heart. We are not sure there's going to be a miracle but we can only hope and the rest is up to God."

For more information on Hydrocephalus, visit Cure.org/hydrocephalus and NHS Choices.

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