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Maria Shortis: The campaigner
Maria Shortis
Maria Shortis battled tirelessly for a public inquiry
Maria Shortis freely admits that there was nothing the surgeons at Bristol could have done to save her daughter Jacinta.

Yet she was, and is, driven as strongly as a parent who feels that a child may have died unnecessarily.

Her efforts, and those of a small number of other parents, led first to a GMC hearing against the Bristol surgeons, and then to a publicly-held inquiry.

Maria lives just a few streets away from the hospital where Jacinta was born.

Almost immediately, she spotted that her fingers were blue grey - the key sign that not enough oxygen-rich blood is being pumped around the body.

Later that day, it was confirmed that the baby had a combination of defects which were at the time inoperable.

"I knew that Jacinta's heart was not viable with life," she says.

What struck her about Bristol was not so much incompetence as appalling communication, in both the way the terrible news was passed on to her, and the manner in which doctors decided what treatments could be attempted.

Those of us who weren't in the know just handed over our children

Maria Shortis
An operation to prolong, if not save, Jacinta's life, was suggested by one cardiologist, then refused by surgeon Janardan Dhasmana, who only grudgingly agreed to carry out the procedure after much argument.

The eventual operation was predicted to give Jacinta at least a few years of life: "At least she would know she was loved," said Maria.

However, in the event, this was not to be, and she began to go downhill rapidly over the winter months.

Eventually Maria faced the worst: "I started preparing myself for her death.

"This was not a good quality of life. I couldn't see how she could maintain that struggle."

Tragedy strikes

She was found face down in her cot a few days later. Maria had woken during the night, and instinctively knew that her daughter had died.

"I don't think anyone is prepared for the acute grief that follows. I can only describe it has having your heart taken out of your body while you are fully conscious. The pain is incredible."

The post-mortem revealed that Jacinta's heart had failed, swelling to three times its normal size.

At this point, Maria had no idea that paediatric heart surgery at Bristol could be a problem, although she had been distressed by the communication failures covering Jacinta's care.

However, early in 1995, a friend drew her attention to press reports of the approaching storm at Bristol.

Then she saw the first television interviews with Dr Stephen Bolsin, who blew the whistle on Bristol.

Maria visited whistleblower Stephen Bolsin
She said: "I thought: 'We have got an anaesthetist who is saying that heart surgery in Bristol is not all that it should be.' My first thought was: 'Oh my God, this guy's just lost his job."

She went to see Dr Bolsin, then based on the conversation, and another with Professor Gianni Angelini, an expert in adult surgery at the infirmary, started a letter-writing campaign, which grew into the foundation of the Bristol Heart Babies Action Group, as more and more parents came forward with their doubts and fears.

The pressure exerted by this group was the catalyst for much of the action taken by ministers once the affair came to light.

What still outrages her is the fact that the problems at Bristol were common knowledge among many of the medical fraternity in the Bristol area - but no-one told the families.

"Those of us who weren't in the know just handed over our children," she says.

"It was benevolent paternalism that caused so much damage."

Building bridges

Her project now is to build a link between doctors and their parents - and encourage a greater level of communication, and transparency between the two.

Her group, Constructive Dialogue for Clinical Accountability, has already held informal meetings, and formal debates involving doctors, statisticians and ordinary members of the public.

All doctors are capable of making mistakes - all doctors are human

Maria Shortis
She says that while individual doctors should not be demonised for making mistakes, they should be open about them, allowing hospitals to treat their root causes instead.

"All doctors are capable of making mistakes - all doctors are human.

"I think the medical profession has been humbled by recent events and they recognise they have to change."

Many parents will be unable to draw a line under events at Bristol, even after the inquiry is done and dusted.

Maria says: "I think it has created a huge number of wounds within Bristol, and has really polarised views."

Certainly for her the campaigning will continue long after the report - and perhaps even Bristol - have disappeared into history.

Maria Shortis
Describes her experience at Bristol
Maria Shortis
"Doctors need to change"
Full coverage of the Bristol heart babies inquiry report

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