Lifetime bond in separation: surgery for twins Nima and Dawa

Conjoined twins Nima and Dawa Pelden’s family hopes they will be among the 350 twins saved in Australia.

Nima and Dawa, the 14-month-old conjoined twins at the referral hospital in Thimphu, Bhutan, where they have spent most of their lives. Picture: Alex Coppel

You could not tell Nima and Dawa Pelden were any different from other babies when they got off the plane. The little girls from Bhutan were smiling, and laughing, and looking around at the lights of Melbourne Airport, and at all the journalists and photographers.

But these twin girls are different. The Pelden twins are joined at the lower chest and abdomen through skin, muscle, bowels and a shared liver, and their mother hopes a team of Australian surgeons can finally separate them.

According to the University of Maryland Medical Centre, one in 200,000 live births worldwide results in conjoined twins. Only 35 per cent of those children tend to survive and they are always identical twins.

The Peldens have come here, with their mother, Bhumchu Zangmo, through a foundation that brings children like them to Australia for surgery they cannot get at home.

Nima and Dawa have a real chance of living independent, healthy lives under the care of Melbourne’s Royal Children’s Hospital.

If they had stayed home, their condition could have been a death sentence for one, or both, of them.

“When they finally landed, we all just felt elated,” Children First Foundation chief executive Elizabeth Lodge tells The Australian. Since 1999, the foundation has been bringing children from developing countries to Australia for life-changing and sometimes lifesaving surgery.

“We couldn’t quite believe they were finally here,” Lodge says of Nima and Dawa. “We’re going to be there for all the MRIs, the surgery, and we’ll be providing 24/7 care afterwards. We’ll be with them every step of the way until they can go back to Bhutan.”

Children First case manager Marina Te Maro first found out about Nima and Dawa’s condition several months ago, when the case was referred to her by doctors from Melbourne’s Monash Hospital.

“Marina has spent every day for the past few months on the phone to the mother, to nurses and doctors in Bhutan,” Lodge says.

The Melbourne Royal Children's Hospital surgical team who will be involved in the conjoined twin's surgery. Picture: AAP

“We have to understand all the medical details, the family situation, and then we have to get passports and birth certificates and get in contact with doctors … it can take three days sometimes in situations like this. Other times it can take three months.”

The girls now join more than 350 children in the past 19 years whose lives have been saved by Children First.

And they will not be alone at the Children First retreat farm in Kilmore, more than 40km north of Melbourne.

Four other children will be brought into the country by the charity during the coming six months for life-changing surgery.

The 14-month-old girls were born in the Kingdom of Bhutan, a mountainous country between China and India, which is led by the “Dragon” King and known for recording “gross national happiness”.

But it is also one of the least developed nations in Asia. Television and smoking were permitted only in the past 40 years.

Zangmo, who has four other children back in Bhutan, told The Herald Sun this week that she cannot allow Nima and Dawa to remain conjoined.

She initially had sought the help of Bhutanese doctors, even if surgery in her own country would have killed one of the twins, she told the Melbourne newspaper.

“I am very concerned for their future life, so I cannot think of not separating them,” Zangmo said through an interpreter. “Even if the surgery takes away one twin, I will be very happy for the other ­living twin.

“I am extremely happy that help has finally come. Not only happy, I am ecstatic now that surgery will be possible in Australia.”

And while the twins’ chances of survival are higher now, RCH pediatric surgeon Joe Crameri warns that complications are still possible.

Royal Children’s Hospital pediatric surgeon Joe Crameri yesterday. Picture: Aaron Francis

“We know the key areas that we have to focus on are the bowels and the liver,” Crameri says. “We hope we don’t have to deal with any obstructions in the chest. The liver gets a lot of blood running through it, so there is the chance it could bleed significantly. The liver is a slightly more forgiving organ … as long as the plumbing that goes to the liver is not shared.”

Nima and Dawa face up to eight hours of surgery to remove the skin and muscle that join them. They could both lose pieces of their liver, but their youth could save them both, Crameri says.

“The liver in young children has an ability to regenerate,” he adds. “So even if we’re losing a bit for both twins, it’s likely they’ll be able to regenerate some in the fullness of time.”

There is no need to rush into surgery as the twins have lived in their conjoined state for 14 months. “I don’t think it’s time-sensitive … They are over a year now, but it’s getting complicated now that they are old enough to mobilise,” Crameri says.

“Now is a good time to separate them but we also have time to check they are clinically well enough to be separated.”

Doctors hope it will take only three months for Nina and Dawa to recover from surgery.

But Children First is trying to raise $100,000 for post-surgery care that will cover six months, plus $250,000 for RCH costs.

“Their time getting home will depend a lot on our ability to repair the abdominal wall,” Crameri says. “They share skin and muscle, and we can’t think about sending them home until that’s supported.”

Luckily, RCH and Children First have dealt previously with conjoined twins. The two groups famously saved the lives of ­Bangladeshi twins Trishna and Krishna in 2009.

Trishna and Krishna were joined at the head, so Nima and Dana will have a different surgical team looking after them.

Krishna and Trishna, Bangladeshi twins joined at the head who were successfully separated in 2009.

While Krishna developed special needs as a result of her surgery, both twins are living happy, independent lives.

“Trishna and Krishna’s mum now lives in Melbourne, along with their little brother … They are both going to school,” Lodge says.

“And if this goes well, their mum and Nima and Dawa’s mum will have something really special they can share, that nearly nobody else understands.”

Nima and Dawa could spend months with Children First. A group of physiotherapists is working pro bono for the foundation to help the twins learn to roll and crawl and walk. And registered nurse Debbie Pickering runs the retreat and will co-ordinate the twins’ pre and post-operation dealings with the RCH, and provide 24-hour care for them and their mother.

“We actually hope the twins won’t have to stay overnight at the hospital until they’re admitted to surgery,” Lodge says.

Nima and Dawa are not the only children resting at the Children First farm. Five children are staying there awaiting surgery. Another four have left in the past month.

“We always try the best we can to get them the surgery in their own country if possible,” Lodge says. “It takes a lot to uproot children and their families and then there’s immigration.”

One boy at the farm is two-year-old Jack from Vanuatu. His brain tissue is protruding into his face and he has tumours all over his head. “For a visa, they asked for Jack’s father’s driver’s licence,” Lodge says. “Jack’s family live on the most remote of Vanuatu’s islands and live a fairly primitive life. They don’t have cars there, let alone drivers’ licences.”

But Jack will undergo surgery to remove the tumours and increase the size of his skull — surgery that will save his life.

“These children go through the most hellish things, but when you see them together at the retreat they are just children,” Lodge says.

“They don’t treat anyone differently and they play together, they help each other … it is just the most wonderful place.

“We had a 14-year-old girl from Syria just go home. She needed her leg amputated, but after coming here for surgery she’s walking on two feet and back at school with her friends.”