Ten years ago, London’s Court of Appeal ruled that Gozitan Siamese twins Jodie and Mary should be separated at the expense of “sacrificing” the weaker twin. Ariadne Massa traces the moral, ethical and religious controversies that dogged a debate that raged in all four corners of the globe.

Silence hung over the operating theatre as the surgeons faced the controversial moment of severing a blood vessel that allowed Mary to live off her Siamese twin Jodie.

The step that surgeons Adrian Bianchi and Alan Dickson were about to take had been deliberated at length from a moral, ethical and religious perspective and the world was watching; standing in judgment over their actions.

“I’ve relived the moment, many, many, many a time... We are trained and used to struggling for survival as best we can. We are not in the business of killing children, so it becomes very hard when you know the action you’re about to take is going to lead to the death of someone, however abnormal they may be,” Mr Bianchi told The Sunday Times.

The 20-strong team worked slowly but steadily getting to the last act. Everyone in the operating theatre knew and could see this was the final moment.

“We looked at each other and we sort of said, ‘Right, this is it’. There was a silence and an intensity of feeling by everyone who was there. All of us felt this was the appropriate action so we carried on. It was never easy.”

After an intense 15-hour operation to separate the twins who were fused at the spine and abdomen, the surgeons and close friends cut the blood vessel keeping Mary alive – she died 10 minutes later on November 7, 2000.

Mr Bianchi, who was the lead paediatric surgeon performing the twins’ surgical separation, then spent another six hours reconstructing Jodie’s pelvic organs and relocating her hips and legs that had been at right angles to her body.

Jodie and Mary – their real names were Gracie and Rosie – were born to Rina and Michelangelo Attard, of Xagħra, at St Mary’s Hospital, Manchester, on August 8, 2000.

Jodie had normal vital organs (brain, heart, lungs, liver and kidneys), while Mary was entirely dependent on Jodie’s heart through the circulation of blood across a large vascular link – if this link was severed, Mary’s lifeline would be snuffed.

The parents had been shattered by the news of Siamese twins and in their first exclusive interview with News of the World, Ms Attard said it took her two days before she ­summoned the courage to look at her babies. She said: “The first time I saw them, I fainted.”

Mr Attard too was recoiling, but slowly the couple started to accept them as their children, which made the loss of Mary all the more heartbreaking.

The Attards had added fuel to the controversial case when they decided to sell their story exclusively to the British media – it is thought to be the biggest cross-media deal brokered by PR consultant Max Clifford.

Local journalists had been treated in a rough manner by relatives keen on stopping them from taking photos because of this deal.

The family had defended their actions by saying the money would go towards a trust fund to pay for their surviving daughter’s continuing medical care.

When contacted by The Sunday Times this week, the parents preferred not to share their story 10 years on, not wishing to reopen the case to media scrutiny.

This rare case may have forever remained shrouded in secrecy had it not ended up in court. Yet if the doctors proceeded to separate the twins without the court’s blessing, they risked being liable for Mary’s murder.

The parents’ deepest parental feelings moulded by strong cultural and religious beliefs did not allow them to choose between their girls. They chose to submit to God’s will, to the extent of accepting the loss of both.

However, regardless of parental consent, it was the medical team who resorted to the court. Mr Bianchi explained that since this was a question of separating two children, one of whom would definitely die, his team was advised by solicitors that their actions could be considered to amount to murder.

“We had to go to the courts simply to clarify that. It had nothing to do with their parents and their feelings,” he said.

London’s High Court ruled in favour of separation despite the predictable death of Mary, but the parents, still unable to reconcile themselves with the decision, sought redress in the Court of Appeal.

In his submission to the Court of Appeal, the then Archbishop of Westminster, Cormac Murphy O’Connor, said: “Though the duty to preserve life is a serious duty, no such duty exists when the only available means of preserving life involves a grave injustice... the good end would not justify the means.”

In delivering judgment on September 22, 2000, the three appeal court judges accepted that separating the twins would indeed be equivalent to an act of “murder”, but justified it on the principle of necessity as being the lesser of two evils.

In an unconventional move, presiding judge Lord Justice Ward spoke about the “excruciating dilemma” he faced in determining the appeal. He said: “Fifty per cent of the population will agree with the decision, fifty per cent will think we have gone potty.”

The Court of Appeal observed that since Mary was “incapable of independent existence” and she was alive only because “she sucks the lifeblood of Jodie”, nobody had the right to be supported by another and upheld the High Court’s decision to separate the twins.

In his contribution to the book Jodie and Mary, edited by Lino ­German, Mr Bianchi said that at this point the parents chose not to challenge the decision. They felt God had shown his will, allowing them the possibility to save at least one of their children.

Mr Bianchi said the parents knew they were free to leave hospital with their children at any time, and there had even been offers from eminent individuals and prominent bodies offering alternatives. Yet they chose to stay, comfortable in the trust that their carers were committed to their best interests and those of their children.

Speaking from his home in Manchester, Mr Bianchi looked back on the case 10 years on and said he never had any doubt in his mind that what had happened and what the team had done on a moral and ethical basis was the right thing to do.

The 63-year-old surgeon, who has recently retired after a 30-year career, insisted that the intention of every doctor was always to attempt to salvage both children with the best possible quality of life.

“We knew from our studies there was a very great likelihood that Gracie (Jodie) would survive because she was in good condition, but that Rosie (Mary) would not. Morally and ethically we felt it inappropriate to allow two children to die, when one could survive,” he said.

Through prayer, the team found quiet strength to carry through what they believed was the right thing to do, even in the face of adversity.

The medical team had faced criticism from peers as prophets of doom predicted both girls could die, or if one survived she would be left with significant handicaps severely restricting her quality of life.

Mr Bianchi concedes there was always the risk both would die, but the expectation was that if they proceeded to separate there was a high probability one would survive and the definite chance the other would die.

“We felt perfectly confident there was a good chance of survival – and not just survival but good quality life. Survival on its own... is not a good criterion to go by. Who wants a survivor who is not going to have any sort of quality of life, both for the child and the family?” he said.

“There was a whole religious, moral and ethical debate but the team’s feelings were that we would fight strongly for survivors with as good a quality of life as we could, not survival for survival’s sake.

“There is a role and a place in the management of children with abnormalities where one should not intervene but allow nature to take its course.

“All that remains is to ensure the action we took to give Gracie a good quality life is sustained and we continue to do everything we can to ensure she has a good life.”

Mr Bianchi believes Gracie’s future is bright, but the ordeal is not over yet.

“I am absolutely confident we can give her a good quality of life, not a normal life, because there are concerns, but we knew of these beforehand and these were part of the assessment,” he said.

“She is enjoying life. Gracie is a bright 10-year-old young lady who is growing up, knows what’s going on around her, runs about, plays with the others and has a future.”

Mr Bianchi continued to meet the Attard family on a regular basis as he flew to Malta some three times a year, and from time to time met them at the hospital.

He adds: “Our aim was to give the family a child in as good a condition as possible who could lead the best quality of life. That’s the goal and the aim we continue to strive for. I wish them well for the future.”

Asked if he felt if there were any lessons to be learnt from this case, Mr Bianchi said the first and most important thing was “never to make instant decisions but to always consult”, particularly when there were moral and ethical issues.

It was also crucial to listen to parent’s feelings and needs, and not just be a counsellor and doctor but a friend, he urged, because they needed a vast amount of support.

Finally, there was the question of taking the opportunity to review one’s moral, ethical and religious feelings. He reiterated his strong belief that despite the criticism they should not have let both children die.

“I believe very strongly in a God who is good and not in a God who demands the sacrifice of a child who can survive. I’m absolutely sure in my own mind that what we did was what I would have done for my own child in those circumstances.”

High rate of cojoined twins

Conjoined twins are a relatively rare event in any community, but Malta has a rate that is two to three times higher than the rest of Europe, according to consultant paediatric surgeon Chris Fearne.

While Europe has a rate of 1.6 per 100,000 maternities, Malta’s incidence is four per 100,000. Mr Fearne believes one of the reasons behind Malta’s higher incidence is probably due to the genetics of a smaller community. But, it was difficult to identify a specific reason.

A study in the Journal of Obstetrics and Gynaecology, October 2009, led by medical historian Charles Savona-Ventura, established that between 1978 and 2007 there were six cases of Siamese twins.

These cases included three live births, two foetal deaths and one spontaneous miscarriage.

Dr Savona-Ventura’s studies reveal that in 1974, a 34-year-old woman had given birth to a two-headed female at Malta’s main hospital. The two normally developed heads were joined to two vertebral columns extending to the lumbar region.

There were no terminated pregnancies in Malta, unlike the rest of Europe. Figures from the European Surveillance of Congenital Anomalies (Eurocat) show that, excluding Maltese data, from 1980 to 2006 there were 300 conjoined twins. These included 73 live births, 43 foetal deaths and 184 terminations.

Looking back on the case, Mr Fearne, one of the doctors who has been entrusted with Gracie’s surgical care, finds it gratifying that her case ended up “reasonably well”.

“You learn to keep going when there’s a bit of hope,” he said.

Mr Fearne spoke about the importance of providing professional counselling since such situations dealt a devastating blow to parents expecting children.

“Everyone paints the picture of having a baby as the happiest moment in life, but all this deflates when there is news that something is wrong,” he said.

“We are faced with weekly problems of congenital anomalies and all the staff provide the parents with the best support they can, but we also need health psychologists to be stationed to the unit of paediatric surgery,” he said.

Timeline

• August 8, 2000. Jodie and Mary are delivered by Caesarean section at St Mary’s Hospital, Manchester, with a combined birth weight of six kilograms. They were fused at the lower end of their spines and abdomen, with each twin having two arms and two legs positioned at right angles to their common trunk. Mary had a large ineffective heart and severely underdeveloped lungs, among other abnormalities.

• August 25, 2000. London’s High Court rules the doctors can separate the twins to give Jodie a chance at life, since to prolong Mary’s life would be seriously to her disadvantage. The parents, devout Roman Catholics, appealed against the decision.

• September 22, 2000. The Court of Appeal, after many a “sleepless night”, rules that Mary was living off time borrowed from her sister. This was putting a strain on Jodie’s heart. All three judges concluded that the operation could be lawfully carried out. The parents accept this decision.

• November 6, 2000. A 20-strong team start the 15-hour operation to separate Jodie and Mary.

• November 7, 2000. At 12.10 a.m., Mary dies. Despite resuscitation, she was unable to establish a heartbeat. She was transferred to a separate operating room where the body was made respectable and taken to her parents, who could hold their daughter as they had always wished for the first time. Jodie’s heart maintained a steady beat and with each passing week grew physically stronger.

• December 2, 2000. Parents ask court to lift parts of media ban protecting their identity and eventually allow first photos of surviving twin to appear in the fee-paying British media.

• January 19, 2001. Mary (Rosie) is buried in an emotional funeral service at her hometown, Xagħra.