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Another day, another step on Maria's path to recovery

¹By Ruth Pollard Health Reporter
May 3, 2006

AT FIRST she was just a sick little girl from one of the world's most desperately poor nations.

Since then Maria Soares has been seen as a symbol of hope for the continuing co-operation between East Timor and Australia, and yesterday she received visits from her nation's Foreign Minister, Jose Ramos Horta, the Premier, Morris Iemma, and the Health Minister, John Hatzistergos.

The tiny 2½-month-old is on her sixth day of life support in the intensive care unit at Sydney Children's Hospital after a life-saving operation last Thursday to repair a hole in her heart, her mother, Lorencia, by her side.

"This is truly a miracle," Dr Ramos Horta said.

"Maria and her mother … are on the way to full recovery.

"I'm sure that many families in Timor-Leste will draw strength and inspiration from baby Maria and her improving condition," he said, thanking the surgical team.

Maria was in a serious but stable condition, and doctors were still undecided on when she would be well enough to be taken off life support. The hospital's assistant director of clinical operations, Jonny Taitz, said Maria's kidneys had not recovered as well as doctors had hoped - a common problem for children who have undergone a heart bypass.

"The plan is to start to wean her off the anaesthesia and off the breathing machine in the next 24 to 48 hours," Dr Taitz said.

She will need to recuperate in Sydney for a further month once she gets out of intensive care, meaning the journey home to East Timor was a long way off. Maria had been gravely ill in Timor's capital, Dili, when the Herald highlighted her plight last month and doctors from the hospital volunteered to operate.

Baby Maria on her rocky way back after heart operation

¹By Ruth Pollard Health Reporter
April 29, 2006

HER heart monitored "beat by beat", 2½-month-old Maria Soares is on life support in Sydney Children's Hospital after a five-hour operation to mend a hole in her heart, or Ventricular Septal Defect (VSD).

The cardiothoracic surgeon Peter Grant said after a "somewhat rocky night" on Thursday the tiny East Timorese baby was stable but in intensive care and heavily sedated. "The surgery went quite well … At the end … her heart began to beat spontaneously."

An intensive care specialist, Andrew Numa, said the operation was a big one for such a small baby. "She is not out of the woods yet but we would … look forward to her slowly improving over the next 48 to 72 hours."

Maria needs another minor operation, which will be performed this weekend or early next week. She is then expected to come off life support and move from the intensive care unit. Her mother, Lorencia Soares, speaking in her native Tetum, thanked the staff who had "shared their experience in medical expertise to help my poor baby, Dulce Maria, to live a normal life".

The operation would not have been possible in East Timor, she said yesterday. Mrs Soares also thanked the Bairo Pite clinic in Dili, the Rotary-funded charity Reaching Overseas with Medical Aid for Children, and Australians who had given their support.

Maria was gravely ill when the Herald reported her plight last month. Doctors from Sydney Children's Hospital volunteered to perform the operation, and she flew to Sydney two weeks ago.

Her life in their hands … at last

By Ruth Pollard Health Reporter
April 28, 2006

Her tiny body illuminated by the harsh glare of the operating theatre lights, baby Maria lies connected to a twisted vine of tubes and intravenous lines, her chest rising and falling to the beep of the monitors.

The 2.6 kilogram bundle is on a huge table, a pink, blue and yellow blanket draped over her legs, followed by a layer of army green surgical sheet; she is dwarfed by the theatre's modern machinery and is, according to her mother, in the hands of God and the doctors working to save her life.

With one last kiss on her two-month-old daughter's temple, Lorencia Soares leaves Maria to members of the cardio-thoracic surgical team who over the next five hours repair the hole in her heart and grant her a new lease of life. At 4pm yesterday doctors declared the operation a success while Maria lay in the intensive care unit at Sydney Children's Hospital, recovering with her mother by her side.

The tiny East Timorese girl had been facing a death sentence when the Herald highlighted her plight last month. Her condition - a ventricular septal defect - had been identified but her country did not have the resources or specialist to fix it. Moved by her story, doctors from the Sydney Children's Hospital volunteered to perform the operation and she was flown to Sydney two weeks ago.

Maria's surgeon, Peter Grant, said the next two days would be critical to her recovery and warned her condition remained serious. Anaesthetist Alan Rubinstein said her low body weight and fragile health meant the operation was both delicate and challenging.

"It is major surgery … for open-heart surgery she is close to one of the smallest we have done," he said. "She can get unstable very quickly … with a small child it can be very challenging."

Body heat and fluid levels become paramount when babies as small as Maria undergo surgery - to regulate her temperature, a device blew warm air under her, and she was covered in a plastic sheet to trap the warmth. Yesterday morning, just minutes before Maria was taken into theatre, Mrs Soares broke down in tears - the long journey from East Timor to the reality of open-heart surgery proving, momentarily, too much to bear.

Flanked by her translator, and Virginia Dawson, a nurse from the Dili clinic that first diagnosed Maria's condition, Mrs Soares said, wiping the tears from her eyes: "I just want to leave it in God's hands and in the hands of the doctors."

Lloyd Roever, from the Rotary-funded ROMAC - Reaching Overseas with Medical Aid for Children - has supported Mrs Soares during her time in Sydney. Maria is expected to stay in hospital for at least a week, and then with her mother will spend a fortnight at Mr Roever's house, preparing for the journey home.

Baby Maria's heart surgery delayed

Sydney Morning Herald
April 20, 2006

Doctors have postponed life-saving surgery on Maria Soares, the Timorese baby with a hole in her heart, to allow her to put on weight before the risky operation.

A spokeswoman for Sydney Children's Hospital, which volunteered to perform the operation after the Herald highlighted her plight, said the operation to patch a gap between the left and right ventricles would probably go ahead next Thursday.

"She's responding really well to additional nutritional support and cardiac management," she said. "We hope the week will make her that little bit stronger."

Operation date set for little Maria

Sydney Morning Herald
April 13, 2006

Sydney doctors will operate on an East Timorese baby next week to fix a hole in her heart.

Two-month-old Maria Soares will undergo a four-hour operation on Thursday at the Sydney Children's Hospital in Randwick in a last-ditch bid to save her life.

The hospital's director of clinical operations, Michael Brydon says the operation will be very risky because of Maria's weight of just 1.9kg.

The hospital normally conducted about 100 ventricular septal defect operations per year, but only about 10 operations were considered as risky as this, he said.

Tests have revealed the hole in Maria's heart is pumping too much blood into her lungs. If she were to get a chest infection before the operation, she would die.

"You need to get in there (and operate) and correct this before she gets into serious trouble," Dr Brydon told AAP today. "Operating on a baby this size is risky."

The baby's health will be touch and go for about two days after the operation, and she will be ventilated by a breathing machine, Dr Brydon said. After about three or four days, doctors should know if the little girl will pull through.

Maria, who arrived in Australia yesterday, would have died if she had stayed with her family in East Timor, he said.

East Timorese baby (in Sydney) arrives for surgery

Sydney Morning Herald
April 12, 2006

An East Timorese baby has arrived in Sydney with the hope of having life-saving surgery for a heart defect. Two-month-old Maria Soares, who was born with a hole in her heart, was undergoing tests at Sydney Children's Hospital at Randwick on Wednesday to determine whether doctors could perform corrective surgery.

The tiny girl's heart is battling to perform its most basic functions and she is unable to put on any weight. Maria weighs just under two kilograms, and would have died if she stayed in East Timor.

Maria and her mother Lorencia flew from Dili to Darwin on Tuesday, before arriving in Sydney early Wednesday morning to meet with the doctors who had offered to perform life-saving surgery.

A hospital spokeswoman said mother and daughter were tired from the trip. "Mum's a bit exhausted to be honest," a hospital spokeswoman said. "I think it was okay yesterday, but today's the second day of travelling and they're just exhausted, she's just a bit overwhelmed."

Doctors expect to finalise plans for Maria's treatment on Thursday.

A flood of goodwills saves Maria's life

¹ By Lindsay Murdoch in Darwin
April 4, 2006

OFFERS have flooded in to help save the life of Maria Soares, the tiny Timorese baby with a hole in the wall of her heart.

After the Herald revealed two-month-old Maria's plight yesterday, the head of cardiology at Sydney Children's Hospital at Randwick, Owen Jones, offered to perform the operation to close the hole.

"I've set the ball in motion - there are various administrative things that need to be done but it looks very promising that it is going to happen," Professor Jones said.

Many offers were made after yesterday's report that Maria was doomed to die because doctors in East Timor could not perform the operation that would be routine in many Australian hospitals. One of the first offers came from Kerryn Phelps, the former federal president of the Australian Medical Association. "I'll see what I can do - I have contacts through the health system," Professor Phelps told the Herald before contacting Professor Jones.

The executive director of the children's hospital, Les White, said Maria would be flown from East Timor to Sydney as soon as visas could be processed, with the help of the Rotary-driven humanitarian project ROMAC - Reaching Overseas with Medical Aid for Children.

Within hours of the story being published, the Dili clinic (Bairo Pite Clinic) run by Maria's doctor, Dan Murphy, received offers to pay for the airfares of Maria and her mother, Lorencia, to and from Australia. Offers came to the Herald from around Australia, including a man and a woman who each pledged $3000. Others offered accommodation for Maria and her mother in Australia.

Dr Murphy is keeping Maria alive with drugs. When told of the offer to perform the surgery, he said: "That's fantastic news." Maria, weighing only 2.6 kilograms, is having difficulty breathing and is not gaining weight. But Dr Murphy hopes Maria and her mother can travel to Sydney within a week after their passports and visas are processed.

Professor White said: "This is a potentially curative operation. We have the skills and expertise here at the hospital and we already work closely with ROMAC, so it's natural we'd like to assist. Maria's case has highlighted how the expertise at Sydney Children's Hospital, Randwick, can be called upon to meet the needs for interstate and overseas children."

A volunteer at Dr Murphy's Bario Pite Clinic, Virginia Dawson, who was co-ordinating the donations, said: "The response has been brilliant."Lloyd Roever, a Sydney-based director of ROMAC, said the organisation had a medical specialist in Dili who would contact Dr Murphy to see what needed to be done to save Maria. Since it was formed in the late 1980s, ROMAC has brought more than 300 children to Australia for treatment, including several from East Timor. "We specialise in providing operations that can save lives or restore the dignity of children," Mr Roever said. Since the middle of last year, the program - backed by Rotary fundraising in all states and territories - has brought 28 children to Australia for operations.

Lorencia Soares, 32, does not accept that Maria is very ill and may die. "I trust Dr Dan," she said at the weekend. "He won't let my baby die."

Dr Murphy said he would be able to stabilise the baby so she could travel. "Please say thanks for everyone for the tremendous response," he said in between treating other patients. "We can now move ahead and save this kid's life."

Dr Murphy, 61, has worked in East Timor for eight years. He speaks fluent Tetum, the Timorese language. Many poor Timorese regard him as a living saint because of the lives he has saved. He welcomed donations to his clinic that would not only help save Maria's life but other Timorese who queue at his clinic every day before dawn.

Donations to Dr Murphy's clinic should be sent to the non-profit Sydney-based Australian Foundation for Peoples of Asia and the Pacific whose website is www.afap.org.

A cry for help from Maria

By Lindsay Murdoch in Dili
April 3, 2006

MARIA, two months old, will die because doctors in East Timor cannot perform an operation on her that would be routine in many Australian hospitals.

She was born with a hole in the wall of her tiny heart that has made it difficult for her to breathe. Her 2.6-kilogram body is not gaining weight, and a doctor is keeping her alive with drugs.

"I am appealing for help to get Maria and her mother to Australia so that surgeons can save the baby's life," said Dan Murphy, an American doctor working in a clinic in a poor suburb of Dili.

"It's impossible for us to perform the operation to close the hole in East Timor.

"We don't have any specialists or the technology in this country. But in Australia she would be saved and able to leave hospital after about a week as long as everything went smoothly."

Dili's poor regard Dr Murphy as a living saint. For eight years the tall, bearded man with a soft voice has run a small clinic for those unable to receive treatment anywhere else. "I've managed to perform miracles here," he said. "I've managed to save people who were going to die but I'm afraid Maria will not be one of them."

The baby is not gaining weight, so would be unable to survive the drugs she needs to keep her alive, he said. "But I'm sure I could control the kid well enough so she could travel abroad for the operation."

Asked how long Maria would live without the operation, Dr Murphy shrugged. Nobody knows. There could be complications at any moment. Dr Murphy says his clinic (Bairo Pite Clinic), which treats up to 500 patients a day, wants a lifeline to a big Western hospital. "When we get one of these cases I have to appeal for help outside the country. It would be great if I can just pick up the telephone and call somebody."

Dr Murphy has arranged for Maria's mother, Lorencia Soares, 32, to stay with the baby in a small room with a stretcher at the clinic. Ms Soares knows her baby is very ill but does not accept the possibility she will die.

"I trust Dr Dan," she said. "He won't let my baby die."

Her husband, Vidal Dos Santos, 35, also refuses to leave the baby to sell bananas he collects in the local market, his only source of income. "I have no money," he said. "But that is all right if Maria can have a normal life. That's the only thing that matters to us."