A mum and dad long to be woken in the night by their screaming newborn – because a rare condition has left a youngster unable to laugh or CRY.
Charlie Reynolds was born with a rare condition called vocal cord palsy, which affects only 200 babies in the UK every year.
The four-month-old was born in May to parents Sophie, 26, and Scott, 31, but needed resuscitation after he struggled to breathe – which has left him unable to make a sound.
Mum-of-two Sophie said:
“Now he can’t make a sound – we long for him to wake us up in the middle of the night, but he’s our silent little angel.”
Sophie, already mum to two-year-old Isabella said that her pregnancy was a breeze, but complications started when Charlie was born within eight minutes of her water breaking.
He came out with the umbilical cord wrapped around his neck, but it was quickly removed by midwives.
Doctors noticed that little Charlie was suffering from what might have been stridor, a high-pitched wheezing noise caused by a disrupted airflow, so took him for more checks before sending him home.
But the family weren’t convinced he was breathing properly, so were in and out of hospital, until he was finally given an endoscopy.
Sophie, from Chipstead, Surrey, said: “The doctors couldn’t feel his vocal cords moving so they put him to sleep and watched his vocal cords for 12 minutes – and they didn’t flicker at all.”
Doctors soon diagnosed the little boy with the rare condition which means he cannot make noise and the family were told that a tracheostomy – a procedure that helps the baby breathe regularly – was the only option.
Sophie said: “Having a baby that doesn’t cry would be a dream for any parent, but you have no idea how much I miss it.
“It’s something most people take for granted.
“For first three weeks after Charlie was born he made squeaky noises when he would breathe, he would cry and cough and sometimes burp.
“He is such a smiley baby, I would give anything to hear him smile.”
Sophie explained that the entire situation has turned her, Scott and Isabella’s lives upside down.
The mum, who opened a soft play centre with a café just a year ago has had to pass the business onto her mum, Karen Martyn, 58.
She said: “I just don’t have time to think about sorting staff and food for my business, it’s a shame.”
Scott, a plumber, is now the sole income earner for the family.
The couple had intended little Charlie to share a room in their two-bedroom first floor flat, but since the tracheostomy, he has needed 24-hour care, and the couple have had to hire a carer for five nights a week.
Sophie said: “Because his body is recognising there is a foreign object inside of him to help him breathe, he is creating a lot of secretion.
“If it gets clogged and we can’t get it out, he dies.”
“The machines that monitor his condition are all quite noisy and Isabella can’t sleep with that noise.”
The specialist equipment has meant that living in the first-floor flat has become unrealistic, but the council have refused to help because the couple are involved in a shared-ownership scheme.
Ian Hore, paediatric consultant at Guy’s Hospital, wrote the letter saying: “Charlie has a life-threatening airway problem.
“He absolutely needs his own room so a carer can be with him, making sure his tracheotomy does not block and so keep him alive at night.”
But despite this the council have refused to budge.
Cllr Rita Renton, the council’s executive member for housing and welfare, said: “Unfortunately home owners, including those with shared ownership properties, cannot join the housing waiting list.”
The couple are hopeful that his condition may improve, as 50 per cent of people who suffer from it regain the ability to make noise within two years.
Sophie added: “We have no choice but to be hopeful at this stage.”