Baby born with her BRAIN growing through the back of her head defies doctors to survive

February 11, 2016  23:48

A baby girl born with a huge purple growth the size of her head has miraculously clung on to life. 

Now 11 months old, Alana Long, of Accrington, Lancashire, was born with encephalocele.

This is a rare birth defect that causes parts of the brain to grow through a hole in the back of the skull.

Doctors told her devastated parents she would most likely die in the womb or immediately after birth, but she beat the odds to survive and was born in February weighing a healthy 8lbs 10oz.

As just eight days old, she had surgery to remove the growth, which was full of cerebro-spinal fluid and brain matter.

The operation left her partially sighted and with slower development, and her parents Catherine, 38, and Mark, 45, expect her to be severely disabled.

But despite this, they say the do not regret their choice to give Alana a 'chance at life' and say she is thriving.

Mrs Long, a checkout operator, said: 'If you look at her now she is like any normal little girl.

'We found at about the encephalocele at 20 weeks and it was upsetting at first.

'And then we looked it up and looked at the facts and decided to continue with the pregnancy because we were told she would either die in utero or at birth.

She continued: 'We decided to give her a chance to live a normal life but we do think that Alana will be severely disabled.

'She is still going strong and laughing though.'

Encephalocele is described as a sac-like protrusion of the brain, and the membranes that cover it, through an opening in the skull.

It happens when the neural tube - a precursor to the central nervous system (which comprises the brain and spinal cord) - in an embryo does not close completely during pregnancy.

Because prospects for babies with this condition are often catastrophic – many do not survive and others are left with lifelong brain damage and other neurological problems - many parents choose to terminate the pregnancy.

But Mrs Long, who is also mother to Emily, six, was determined to give her daughter a chance to survive.

After her birth, Alanna was immediately taken away by midwives to prepare for the surgery to remove the encephalocele, so her mother was not able to cuddle her.

Her husband, a customer services advisor, managed to see his daughter that day, but she faced an agonising wait to see her 24 hours later.

Mrs Long said: 'As soon as she was born, all I wanted to know was that she was breathing.

'I didn't get to see her when she was born.

'But when I did see her I was able to keep it together because I had so much time to mentally prepare myself.'

But the eight-hour operation Alana had to endure to remove the encephalocele was agonising for her parents.   

Mrs Long continued: 'When she underwent surgery, it was pretty terrifying really.

'It was awful waiting to hear that she is okay - it is probably the worst that I have ever been.

'It was such a long wait because she had a seizure as they were trying to bring her round.

'When she was brought round the next day, it was a such a huge relief to hear that everything was OK.'

Now, Mrs Long insists Alana is 'very happy' as she continues to grow. 

She will be monitored as she gets older so the family will know more about her disabilities. 

Mrs Long said: 'Now she is a very content little girl and she doesn't cry and can't express herself.

'She does scratch her face and we think it is because she does not have pain perception but we are waiting to see.

'But she is a lovely girl to have and she is very happy and always smiling despite the challenges that she faces every day.' 

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