A father has told the Scottish Hospitals Inquiry how his baby daughter was “blue lighted” to hospital more than 40 times in her first year.

At six months old, Abhishek Behl’s daughter was diagnosed at Edinburgh’s Royal Hospital for Sick Children (RHSC) with Alternating Hemiplegia of Childhood (AHC). Only two children in Scotland and 55 in the UK have the condition.

It involves many neurological symptoms, including paralysis, dystonia, seizures, ataxia, global development delay, epilepsy, and life-threatening apnoea (breathing difficulties) requiring intubation and ventilation in intensive care.

In his witness statement, Mr Behl said: “Our experience with RHSC started on August 4, 2017 when my daughter was only five days old.”

Giving evidence in person to the inquiry in Edinburgh yesterday, Mr Behl described how his daughter’s illness first appeared. Mr Behl said: “I noticed movement in her thigh and was watching – my wife, being a hospital doctor, video recorded it – and that was the first time we took her to the old Sick Kids (RHSC).”

Counsel at the inquiry asked: “Was it right that these were outpatient and inpatient admissions?” Mr Behl said there were frequent admissions. In February 2018 the diagnosis of AHC was officially made. Later, Mr Behl became one of five or six members of RHSC’s Family Council and a trustee of the national charity AHC UK.

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He spoke about how his daughter was being discharged one day before he had been told Edinburgh’s new Royal Hospital for Children and Young People (RHCYP) was due to open. Mr Behl said: “I was advised that if something does happen not to come to the old Sick Kids A&E and to go to the new Sick Kids A&E.”

Counsel to the inquiry said: “And that was because the hospital was closing?” Mr Behl replied: “Through social media I came to find out it was not opening and we quickly gave a call to the specialist nurse and they did not know what was happening.

“In the old hospital everything was saying goodbye. It was sad the Family Council did not know what was happening. I have said it in my statement at [RHSC] it was like a makeshift scenario.”

In his statement Mr Behl highlighted the lack of communication from Lothian’s health board. He said: “The uncertainty about the delays and the lack of  communication also left me feeling really vulnerable.” Mr Behl’s daughter was eventually first admitted to the RHCYP in March this year, more than 18 months after the move was supposed to have happened and she received a certificate for being the first patient on the neuro ward.”

The inquiry also heard from a mother whose daughter was treated at the Royal Hospital for Children in Govan, Glasgow. She described “industrial levels of cleaning” as staff disinfected rooms.

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Louise Cunningham’s daughter died at home in January 2018 from neuroblastoma. Giving evidence remotely, Ms Cunningham said her daughter was diagnosed with stage four high-risk neuroblastoma in March 2017 when she was two years and eight months old. She was treated at the hospital from March 2017 until she died.

About a year after Ms Cunningham was told her daughter’s case was being looked into, she received the case review report. The inquiry counsel said her daughter went to hospital again in November 2017 with a fever and the report said “her line was flushed and her condition deteriorated”.

He added: “They describe it as a collapse and the crash team had to be there. As far as an explanation for all of that, what they say is that there were cultures taken at the time and they show infection from two types of bacteria, enterobacter cloacae and raoultella planticola.”

Ms Cunningham’s statement to the inquiry said: “The report concludes they didn’t really think the hospital had anything to do with it. At the end of the day, I think there is a lot more information that shows otherwise.”

The inquiry continues.