Emily Barut: An easy-to-love child who was profoundly disabled

Emily Barut’s favourite place to be was lying on her mother’s chest in her mother’s bed. She loved the water and her nightly baths in her jacuzzi with lights. Her favourite food was lamb.

Emily had the mental age of a baby under the age of six months, but Emily was 11. Born with microcephaly, she developed severe epilepsy, couldn’t speak, move or swallow fluids due to a risk of aspiration; vomiting was dangerous for her. She wore a full-body latex suit to support her body. She had a tube into her stomach through which she received liquids and medications so numerous they had to be collected from the pharmacy in a van.

Emily was Bernadette Scully’s only child. A doctor, she had wanted a baby so much that she went through IVF three times before conceiving her. Her first two attempts had resulted in miscarriage. She was “over the moon” throughout the pregnancy but devastated by her diagnosis in 2000 when Emily was two weeks of age. The doctor spent the next 11 years trying to keep her alive and well.

Special school

Emily lived at home with her mother all her life and attended a special school every day when she was well enough. Her mother acted as her GP and travelled to clinics in the UK to learn more about the care her daughter needed, including the physiotherapy exercises that then became part of their daily routine.

Emily didn’t suffer from bedsores or contractions of the limbs often seen in people with such limited mobility.

Emily was found dead in her bedroom in September 2012; her mother was found unconscious in another room, having taken an overdose. A suicide note she had written that day was found in her handbag nearby. She wrote of not wanting to die, but not being able to let Emily’s suffering continue.

“If anyone thinks I’m awful for doing this, you should have listened to poor little Emily crying the last eight days. I love her dearly,” she wrote. “I can’t watch it any longer. The pain is too big, the struggle each day is too hard, the loneliness and isolation too much.”

Dr Scully was in intensive care when the note was found the following day. She learned that gardaí were looking for her and left the hospital to go to the Garda station a few days later. She had missed her daughter’s funeral.

A postmortem examination had been conducted and samples of Emily’s blood taken. It was decided to screen it for chloral hydrate, an old-fashioned drug no longer licensed here. A laboratory in Germany found its metabolite present at 10 times the therapeutic level.

Interviewed

The GP was arrested by appointment and interviewed as soon as she was deemed fit. This was more than 18 months after her daughter’s death.

Dr Scully had the unusual position of being both accused and mother of the alleged victim. She continued to be flanked by her family every day of the trial. Emily’s father never attended.

The first reading of the suicide note in court prompted uncontrollable sobbing from the man to whom it had been addressed, Ms Scully’s partner, Andrius Kozlovskis. He later got into the witness box and described the horror of finding Emily cold in her bed and being unable to wake her partner.

He described their daily routine, including the hour and a half it took to give Emily each of her three meals. He said Emily was an easy child to love and was their life.

The principal of Emily’s school, Denise Cole, described her pupil as “invariably beautifully presented”.

“Any day of the week, she could have been put to model children’s clothes,” she said.

Complex

She said Emily was probably the school’s most complex pupil as regards the severity of her disability, which was at the top of the profound level.

She said the school’s speech and language therapist wasn’t qualified to deal with dysphagia. This was a difficulty swallowing that Emily had, which came with the risk of choking. She said they had “several frights” with Emily.

She and her staff wanted to be trained in how to safely feed Emily but this never happened. They were instead advised not to feed her because they wouldn’t be covered by insurance. Either Ms Scully or her partner then attended the school daily to feed her.

She also said that even something as simple as a wheelchair for Emily wasn’t available at the school.

Despite the funding difficulties, she said Emily was “so well maintained” and in much better shape that would be expected.

“It was because of the level of investigation Bernie put in,” she said. “It’s something she did in the hope she might find one little thing to help Emily.”

World leader

The trial had heard that Dr Scully used to bring Emily to the Bobath Clinic in the UK, world leader in caring for children like Emily.

“She was the little baby I always wanted,” Dr Scully said. “Her life was miserable at times but we did have some lovely times.”

Her carer, Margaret Lynch, said her seizures had become worse over the last few years of Emily’s life and were “distressing”. Emily also became sick more often, and took longer to recover.

“She was a lovable child, but she was hard work,” she said, explaining that she enjoyed most of her day with her.

In an emotive closing speech, Dr Scully’s barrister Kenneth Fogarty SC said that, depending on the jury’s verdict, the case would start a national debate.

The jury favoured his argument and reached a unanimous verdict of not guilty following just over four hours of deliberations.

A debate has now begun but what direction it will take is as yet unclear.