Parents tell of baby's 'one in a million' health battle

Three-month-old Kodie Charlton-Roberts is receiving round-the-clock care for suspected Wildervanck syndrome at Newcastle’s Royal Victoria Infirmary, and experts at Great Ormond Street Hospital are also offering support.

The ailment is believed to have only been diagnosed in an estimated 100 people in the past 50 years and causes a range of serious health issues.

In Kodie’s case, he is blind and deaf, his spinal cord is split in two, he is missing vertebrae at the top of his spine and his windpipe is displaced.

He needs an airways tube to help him breathe and there are only two medical procedure options available to relieve some of his symptoms – and both carry serious risks.

He has already undergone two emergency procedures – one after he stopped breathing – and he has even been placed in an induced coma.

His parents Abbie Charlton, 25, and Stephen Roberts, 38, say his health problems came as a bombshell just hours after birth at Sunderland Royal Hospital, there having been no suspicion during pregnancy of any issues.

The couple are now travelling daily from their home in South Shields, to the RVI, after Kodie was transferred their at 10-days-old.

It is taking efforts by their whole wider family effort to find a new routine for their two other children – Leo, five, and Hunter, four – and an online fundraising appeal has been launched to help with their travelling costs and day-to-day expenses.

The couple also hope other parents with similar care experiences will come forward with key advice and guidance.

Abbie said: “Nothing at all was picked up before Kodie was born that suggested we should be worried.

“It came as a huge surprise and shock to us when problems started when he was just a day or two old.”

She added: “The doctors noticed that his spine was quite misshaped, and he didn’t have a visible neck.

“He had not been able to take his bottle and had to go on oxygen when his breathing declined.

“Our lives have been turned upside down and are never going to be the same again. He is going to always need 24-hour care.”

Exploratory surgery at the RVI has found Kodie’s breathing difficulties were due to having no neck and a crushed windpipe and have fitted an airway tube which has stabilised his condition – but emergency surgery was still required when he stopped breathing one night.

Abbie added: “He was rushed into theatre and they saved his life but he had to be put into an induced coma for two days.

“It is not confirmed yet but we believe his underlying condition is Wildervanck syndrome.

"It’s known to only affect females.

“No male who has had it is thought to have survived birth and that is why they don’t know for sure if he has it.

"It is so little studied.

“They are doing tests and the people at Great Ormond Street have been in touch to give a second opinion.”

After further meetings with doctors, the couple have been told they have two choices around Kodie’s short-term care.

They must decide whether to continue with air support treatment through a tube, or for him to have a tracheostomy procedure – cutting into his windpipe to support his breathing.

Abbie said: “Both carry risks of a life-threatening event happening again.

“The decision has been put in our hands and at the moment.

“Kodie has only a 20% chance of survival if we go down the tracheostomy route, due to his main blood vessel from his heart being in front of his windpipe.

“We do need help and support and that is why we hope parents who have been in a similar situation will get in touch with advice and help.

“We have also set up a GoFundMe page, because we are finding it very difficult to meet the costs of travelling to the hospital every day.”

*The family’s GoFundMe page is at www.justgiving.com/crowdfunding/corinne-richards-5