A mother has told how her brave baby son is repeatedly brought back from the brink of death by medics – as he battles a mystery rare condition which has baffled doctors.
Riley Richardson, who is just two months old, has an undiagnosed condition which has left him in hospital for the whole of his life.
Brave Riley has spent the majority of his life on a ventilator in Royal Victoria Infirmary in Newcastle as doctors attempt to discover what he is suffering from.
He has been tested for ultra-rare congenital central hypoventilation syndrome (CCHS), which affects only 1000 people in the world.
CCHS is a life-long disorder of the nervous system that affects breathing.
It causes a person to hypoventilate, often during sleep, resulting in a shortage of oxygen and a buildup of carbon dioxide in the blood.
If untreated, CCHS can lead to disability and death.
However, doctors still have no idea what is wrong with Riley.
Baby Riley was born on August 15 at Carlisle’s Cumberland Infirmary.
When he was born he didn’t scream or cry and he was rushed away from his mother Rachael Williams, 30, to a special care unit.
Riley was stabilised but was floppy and not feeding.
He also struggled to breathe.
Rachael has spoken of the moment she gave birth by cesarean section before Riley was whisked away.
She said: “It took him a while to cry when he was born, he didn’t scream or make a sound.
“Before John and I could see him, he was rushed to special care.
“I was hysterical, beyond hysterical.
“I didn’t know what was happening and it felt like my baby had been torn from me and my worst nightmare was becoming a reality.
“He was lifeless.
“I just kept asking them ‘do you think I’m going to lose him?’.
“They couldn’t answer.”
Rachael and Riley’s father John Richardson, 44, tried everything, including ‘skin-to-skin’, but it soon became clear he needed specialist treatment.
It was decided to take Riley to Hartlepool hospital, however his condition deteriorated on the journey and a decision was taken to take him straight to the RVI.
Since being rushed to the hospital, doctors have attempted to diagnose what is causing Riley’s ill health.
For the past few weeks, while the family anxiously awaits the test results, Riley has been spending minutes – and even hours – without his ventilator, to try and build up the strength in his lungs.
It has not been without risk – and twice doctors have had to bring him back to life.
Rachael said: “He had to be resuscitated twice in one day.
“I had him in my arms.
“I felt awful, so helpless.
“The colour just drained from him.
“He went grey and his lips went blue.
“He just looked dead.
“We had to pull the bell to get the nurses and doctors in and they came running over.
“I felt like I was screaming, but apparently I was just shouting Riley’s name, over and over again.”
The hospital staff brought him back, only to be forced to resuscitate him a second time later.
Rachael, who also has a three-year-old son Ethan, said: “They’ve tested him for congenital central hypoventilation syndrome (CCHS).
“We’re praying and hoping that’s what it is, because if it’s not, then they just don’t know what is wrong with him.
“I don’t want him to have anything, but at least they would know what it is. There’s a path to go down, he could have a life.”
The family wants to thank all the staff at the hospital for their devotion to Riley, and to finding out what is making him so poorly.
Rachael said: “They have been fantastic, just amazing.
“The doctors and nurses have done every test possible to try and find out what’s wrong with him.
“We are so grateful to them.
“Our ultimate Christmas wish is to get Riley home, to have a lovely Christmas together watching films and snuggling on the sofa.
“But until then, all we’re wishing for is for Riley to be healthy and happy.”