A baby has defied the odds to reach his first birthday despite being given such a low chance of survival that his parents bought a coffin for him before he was born.
While still in the womb, Noah Wall was diagnosed with a catalogue of problems including spina bifida, rare chromosomal abnormalities and fluid on the brain.
His parents, Shelly and Rob, were advised to have him terminated but they refused, determined to give their son the chance of life.
Noah was born paralysed from the chest down and with a tiny amount of normal brain tissue – most of his skull was filled with cerebrospinal fluid.
However, he has stunned doctors by reaching his first birthday and has even learned to move his arms, smile, wave and say ‘mama’ and ‘dada’.
Mrs Wall, 41, from Abbeytown, Cumbria, said: ‘He is an absolute gift and we are very lucky that he is here.’
Noah was diagnosed with spinal bifida, a condition which affects the development of the spinal cord, when his mother went for her 12-week scan.
Doctors also told the couple that the condition had left a massive hole in Noah’s back which they said they would be unable to stitch up.
The couple were offered a termination but they stood firm, adamant that their son deserved the chance to live.
However, they realised that the odds of survival were extremely low so they began organising the unborn baby’s funeral.
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Mrs Wall said: ‘Before he was born we received a letter saying he would not be resuscitated if he couldn’t breathe on his own because his condition was so serious.
‘To be pregnant and have to go to a funeral parlour to pick a coffin for your unborn baby is absolutely horrible.
‘My sister made a Christening outfit for him and we had a birthday cake because we thought it could be the only birthday he would ever have.
Noah is also paralysed from the chest down and has chromosomal abnormalities
His parents were advised to have the pregnancy terminated as Noah's chance of survival was so low
‘I was always positive right the way through but we obviously needed a back-up plan.
‘But keeping strong and positive as a family was important. It was a frightening situation to be in, really scary, but we never gave up on Noah.’
Astonishingly, when Noah was born on March 6 last year, he took his first breath and began crying.
As a result, doctors changed their minds and carried out a five-hour operation to stitch up the hole in his back.
He was allowed home after ten days but had to return to hospital for two months when doctors discovered an infection in the fluid in his head.
Noah's brain scan shows how little normal brain he has - the grey area near his forehead is the only normal brain tissue, the black area is fluid
Mrs Wall said: ‘The first thing we heard when he was born was him taking a breath and then crying, which was unbelievable.
‘We had been told that he wouldn’t be going down to the baby care unit because they were adamant that he wouldn’t take a breath and said it would be cruel to keep a baby alive on oxygen.
‘It is amazing the things that he can do with such a small amount of brain - he folds his arms, can open his eyes, wave to you, say ‘mama’ and ‘dada’ and tell you when he is hungry.’
Noah requires constant supervision, has to be massaged five times a day and requires regular sessions of physiotherapy and hydrotherapy.
His skull is fitted with a shunt which is used to drain the cerebrospinal fluid from his head.
Mr Wall, 47, Mrs Wall and Noah’s sisters Steph, 21, and Ally, 16, are forced to live day to day knowing that every day could be the last they spend with him.
His parents were told that he would not be resuscitated if he was unable to breathe on his own
But they remain positive and are making plans to prepare his legs for the possibility of him being able to stand.
Mrs Wall said: ‘We don’t know how long he will live but we won’t put a time on him. We just enjoy every day and do as much as we can with him.
‘We spend a lot of quality time with him and he gets a lot of attention. We don’t know what he will be capable of but he is going in the right direction.’
Mrs Wall now raises money for Noah, and awareness about spina bifida by running a shop which sells products such as clothes, bags and teddy bears.
Noah is now celebrating his first birthday but his family do not know how long he will live
She said: ‘By telling our story we want to inspire others who are pregnant with disabled babies not to give up hope.
‘We also want to make sure mothers take folic acid and vitamin B12 before their pregnancy as well as during as a lack of these vitamins can cause spina bifida.
‘There are 900 pregnancies with spinal defects every year and only 200 babies are actually born.
‘I wish someone had told me about the importance of taking folic acid before pregnancy. I had taken it, but not early enough.’