Miracle baby Noah Wall has defied the odds to reach his first birthday – despite being born with just TWO PER CENT of his brain.
The tot was diagnosed with a catalogue of problems while in the womb including spina bifida, rare chromosome abnormalities and fluid on the brain.
Despite gloomy predictions by doctors, his mum Shelly Wall and husband Rob refused a termination – determined to give their son the chance of life.
Noah was born paralysed from the chest down with just two per cent of the normal brain tissue and the rest of his skull filled with cerebrospinal fluid.
But he has stunned doctors by reaching his first birthday and has even learned to move his arms, smile, wave and say ‘mama’ and ‘dada’.
Proud mum Shelly, 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 Shelly 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 regularly offered a termination but they stood firm, adamant that their son deserved the chance to live.
But realising that the odds of survival were extremely low, the family began organising the unborn baby’s funeral.
She 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.
“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.
He was paralysed from the chest down – but he was alive. Doctors changed their mind and carried out a five-hour operation to stitch up Noah’s back.
The tot was allowed home after ten days but due to several emergencies had to return to hospital on several occasions.
He ended up in hospital for two months after doctors discovered an infection in the fluid in his head.
Shelly 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 24/7 supervision, has to be massaged five times a day as well as undertaking regular sessions of physiotherapy and hydrotherapy.
His skull is fitted with a shunt which is used to drain the cerebrospinal fluid from his head when he goes to the toilet.
The fluid became infected when Noah was seven weeks old and doctors had to manually drain 2.5 litres of fluid with a needle before re-fitting the shunt.
Rob, 47, Shelly and Noah’s sisters Steph, 21, and Ally, 16, are forced to live day to day knowing that it could be the last time they spend with him.
But they remain positive and are making plans to prepare his legs for the possibility of him being able to stand.
Shelly 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.”
New research has shown that a lack of folic acid three months before pregnancy – not just during – can cause spinal bifida and brave Shelly now spends her time raising awareness through Noah’s story.
She updated her Twitter on a daily basis throughout her pregnancy and has support from celebrities including Dragon’s Den star Theo Paphitis – who handed her one of his ‘Small Business Sunday’ awards – and singer Beverley Knight.
Shelly also raises money from Noah through his own shop, selling products such as clothes, bags and teddy bears, and released his own single ‘Noah’s Ark’ on Monday.
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.
“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.
“I’m campaigning constantly and have been invited to Westminster to speak about it.
“It would be nice to get something into the education system about why planning pregnancies is so important.
“The amount of support have been given has been unbelievable. A year on, I didn’t think we would have got this far.”
