How conjoined twins Nima and Dawa from Bhutan will be separated in Melbourne
AT first their mother shielded them, afraid of how those in remote Bhutan would react. But there was only love for conjoined twins Nima and Dawa in their home town as they prepared for a life-changing trip to Melbourne. This is their amazing story.
VIC News
Don't miss out on the headlines from VIC News. Followed categories will be added to My News.
BHUMCHU Zangmo had never even heard of conjoined twins before doctors told her there were complications with her newborn girls.
It was only as she finally saw her tiny Nima and Dawa for the first time she understood what the shocked doctors were talking about.
LATEST: TWINS NIMA AND DAWA ARRIVE IN MELBOURNE
CONJOINED TWINS’ MERCY DASH TO MELBOURNE FOR RADICAL SURGERY
PICTURE SPECIAL: OVERCOMING MOUNTAINS TO GIVE CONJOINED TWINS HOPE
“When I first heard the news I had babies like this I could not believe it … I had never heard of conjoined twins,” Bhumchu said.
“When I first saw them like that I thought surgery may not be possible. I feared that they would remain like that their whole life.
“In Bhutan, this type of condition is unheard of, so I was scared whether they would live or die.”
Terrified at how the world may react to her daughters, Bhumchu, 38, and her husband Sonam, 41, have shielded them from almost everyone, staying inside a shared ward at National Referral Hospital in Bhutan’s capital Thimphu.
But, with a mercy flight to Australia just three days away, the parents took the girls out in public for the first time on Friday to pray at a Buddhist temple 300m away.
As they were approached again and again by a procession of old women, men and monks, Bhumchu was overwhelmed when Nima and Dawa were met only with blessings and offerings.
“I don’t mind now. It is nobody’s fault that they were born with this condition,” Bhumchu told the Herald Sun through an interpreter.
“I have been praying every day and these days I am praying to come back safely. I have also done a lot of rituals for a good outcome.
“I am scared about the outcome of the surgery but I believe that in a foreign country they will do a good job, and I hope and believe that everything will be fine.”
All Bhutanese twins are called Nima and Dawa: the first born is named Nima, after the sun which rises first, and the second Dawa, after the later rising moon.
But Bhumchu and Sonam’s girls are so identical they cannot tell their sun and moon apart without looking for a small, faint birth mark on Nima’s right arm.
While they may look like they are trapped staring into a mirror, Nima and Dawa have vastly different characters.
Nima is the more dominant twin, increasingly trying to push Dawa and even manipulating their bodies so she can kick her sister in the back of the head when she wants to move but her sister won’t play along.
Dawa is content to lay around and watch cartoons on a mobile phone or play with money — until her stronger and healthier sister disturbs her by wanting to interact.
Even with the frustration of being permanently in each other’s face the sisters are extremely fond of each other. They spend most of their time happily playing together on their bed.
They cannot sit but they can stand, though they rarely allow each other to. For one to stand up her sister has to agree, however they seldom want to move at the same time or in the same direction.
More critically, they also disagree about when it is time to sleep and won’t allow each other to rest.
The lack of sleep and stress has added to their nutrition problems and deteriorating health.
In the past two months the sisters lost 40 per cent of their bodyweight.
Returning to their home village of Bikha — at almost 3750m in the eastern Himalayas and two days journey from the medical help in Thimphu — has been out of the question for the poor family, even though they have four other children aged six to 16.
But after six months in hospital they had been able to escape to Bhumchu’s sister’s home in a less remote village two hours’ from the capital, until the twins’ had to be readmitted due to their deterioration.
Known as the happiest place on earth, the Kingdom of Bhutan is also one of its highest, most remote and isolated.
In the shadows of Mt Everest and other monster mountains, sandwiched between giants China and India, Bhutan’s 800,000 citizens live in an elevated nation two-thirds the size of Tasmania.
While it remains one of the least developed countries in South Asia, Bhutan pioneered the notion of ‘Gross Domestic Happiness’ — where its government measures the collective happiness of its population and bases policies on contentment, rather than wealth.
But living in a country with limited medial resources, life has been terrifying for Bhumchu and Sonam.
“There are many difficulties,” Bhumchu said.
“They can only sleep two or three hours because when one is asleep the other is awake.
“Whenever I need to bath them or do anything with them there has to be at least two people to help.”
The normal development other babies enjoy is proving dangerous for Nima and Dawa.
When they began trying to crawl one twin dragged her sleeping sister over the side of the bed, crashing both head-first into the floor.
Continuous laying in the only two positions available to them — they can be flipped to lay on either side of their bodies — is also causing flat spots to develop on their heads and distorting their faces.
Doctors believe the deformities will disappear within two years if they are separated and finally free to sit, stand or lay wherever they want.
But until now Nima and Dawa have been confined to their very simple third-story hospital bed. Their biggest luxury is a thin blue folding screen offering a little privacy from the ward’s other five patients.
To venture further through the crowded hospital immediately draws unwanted eyes.
As he carries his daughters back from the doctor’s office three buildings and two flights of stairs away, Sonam almost runs through the crowded corridors. Although his daughters are wrapped in a blanket almost everyone notices them.
When they finally do brave the public to offer prayers at the Bhutan Memorial Chorten, the relief is obvious.
As they circle the temple in prayer, an old man tells the family that if the girls survive they will all be blessed with good luck: “I have nothing to give, but I will pray for them,” he said.
Resting on the temple steps an old lady asks Bhumchu if she can have one of the beautiful twins, not realising they cannot come apart.
“You can take both. Go on, take them,” Bhumchu jokes as she bursts into laughter.
Another lady hailing from the same remote region Tashigang region asks whether girls can eat food. She is relieved when Bhumchu tells her help, and hope, is almost at hand.
“Now we are taking them for treatment to a foreign country,” Bhumchu says proudly.
TELLTALE signs on an ultrasound — including highly unusual positioning of twin babies’ heads close together — did not register with medical staff at the small Phuntsholing General Hospital near Bhutan’s border with India.
But on July 14, 2017, as obstetricians struggled to deliver the babies one at a time via caesarean, they were shocked to find them locked together.
Not knowing what to do they referred the newborns to Bhutan’s biggest hospital six hours away.
It was only the next day as they were preparing Nima and Dawa for the long ambulance ride doctors finally showed Bhumchu her daughter’s were conjoined.
They appeared in good health when they arrived at the crowded National Referral Hospital, but paediatric surgeon Dr Karma Sherbub soon discovered Nima and Dawa almost certainly have shared liver and possibly much more.
In a last resort everyone prayed would never be needed, a surgical team was put on standby around the clock. In case one became gravely ill they would perform an emergency separation, knowing one would not survive.
But, with no chance of safely separating them in Bhutan, the doctors decided to wait and see if the girls survived before asking the world for help.
“We decided we would wait for six months before we would decide to do anything,” Dr Sherbub said.
“I sent a picture to (Monash Children’s Hospial surgeon Assoc Prof) Chris Kimber, and he said he would like to operate.
“We are also prepared for an emergency because if one twin dies we have separate them within six hours.”
Finally, after being on permanent watch for 14 months, the Bhutanese surgical team can end their vigil thrilled they never had to intervene.
“The twins have taught me so many things, things the books do not teach and we don’t lean in medical schools,” Dr Sherbub said.
“I have a special place in their heart and I feel they have a special place in my heart.”
HOW THE SURGERY WILL WORK
Even when they arrive in Melbourne, with the most sophisticated equipment available, it will only be in the operating theatre that a huge Royal Children’s Hospital team will know exactly what they are dealing with.
But RCH head of paediatric surgery Mr Joe Crameri is confident of a good result.
“They are two twins that seem, on the limited information that we have got, separatable, with both of them then able to function normally — that is what we are aiming for here,” Mr Crameri said.
“We have the ability to normalise the lives for two individuals who just happen to be stuck together — and hopefully two individuals who can then get back to doing all the same things that their peers are doing.
“If we can get them separated and give mum and dad two kids to look after, then that is fantastic.”
A team involving at least six specialist surgeons and dozens of anaesthetists, nurses and intensive care specialists are being prepared for the operation, which could take place in a matter of weeks.
Mr Crameri, who will lead the separation effort, said the process had already begun thanks to two Melbourne and an Adelaide surgeon who diverted their travels in the Himalayas to examine Nima and Dawa during the past year.
“The initial reports have always been that they are pretty healthy but joined centrally,” he said.
“We have a very rudimentary scan which has been done of the twins to give an idea, but it is not at the sophistication that we would normally expect in our country. But it is enough to give us an idea of what is likely to be connected on the inside.”
The images suggest the sisters share a bowel and a liver that can be safely split.
Crucially, their hearts and lungs appear to be individual.
“We will do more very specific imaging that we have available to us here that will make us more certain, though you can never have absolute certainty that everything is very separatable,” Mr Crameri said.
“It is very difficult on any scan to know whether they both have individual bowel that just happens to be mixing in the middle, or whether there is a direct connection between them.
“We are hoping it will show that we just need to split the liver and maybe separate a bit of bowel, then focus on closing the gap that is left behind, which is very important.
“I guess we see in principal that as long as the twins have got some component of liver themselves, which the scans suggest, we can divide liver and we can divide bowel.
“We will have to have some contingency plans to deal with the liver and bowel and any conjoined structures in the tummy once we get a look at that area.”
Desperation to help the twins increased in recent weeks as they shed 40 per cent of their bodyweight and were readmitted to Bhutan’s National Referral Hospital and placed on supplements.
With surgery lasting five hours or more, the first step in Australia will be further building the girls’ strength and undertaking 3D scans.
When the day for separation finally does come around it will begin with a single operation but involving two complete teams of surgeons, nurses and anaesthetists.
Once the conjoined sections of the Nima and Dawa’s bodies are severed the surgery will break into two separate operations, with one team accompanying each of the sisters in two operating theatres to rebuild their individual bodies.
The sisters are expected to need up to five days recovering from the ordeal in intensive care, followed by weeks in a hospital ward.
While there have been sets of conjoined twins who have lived fulfilled lives connected to each other, Mr Crameri said the nature of Nima and Dawa’s join would make life extremely difficult if they were not separated.
“The way these twins are joined, where they are essentially facing one another, it would be very difficult for them as kids moving into that stage where you are normally mobile and getting around.
“This would severely affect their socialisation and interacting and it would be very difficult for them to get around independently.”
Mr Crameri was part of the 1996 RCH team which separated Papua New Guinea twins Eaustina and Eaustocia Bosin, who arrived just weeks after their birth and weighing only 2kg combined.
Joined in an extremely similar way to Nima and Dawa, the Bosin twins’ separation was so successful the sisters only learned about their joined start to life while living as teens in Bougainville.
The world again turned its attention to the iconic Melbourne hospital in 2009, holding its collective breath during a marathon 31 ½ hour operation to separate Bangladeshi twins Trishna and Krishna.
Despite being joined at the head and sharing brain material as well as vital blood vessels, surgeons Wirginia Maixner and Alison Wray remarkably saved both girls’ lives.
“When you are looking at conjoined twins there is a lot of variation and you are potentially dividing them at the expense of one’s health compared to the other, because one can predominate with what is there,” Mr Crameri said.
“We see these twins are set up to be separated.
“Separating them should really be able to give them some quality of life, and a quality of life they can lead back home, being part of the community where they have grown and developed.
“Hopefully they will not need major long-term interventions or special help, they should just be able to go back and live normal lives in their community.
“It is good if somebody should be able to provide them that opportunity and, if we have the resources to allow them to do that, then that is what we like to do.”
HOW YOU CAN DONATE
With the surgery and 24/7 care Nima and Dawa will require in Australia the separation process could cost up to $300,000.
CFF chief executive officer Elizabeth Lodge now hopes the Australian public’s generosity during a fundraising campaign can match the RCH’s skill.
“These little girls are extra special because if we didn’t do this surgery … we are just concerned whether they would live,” she said.
“We are just thrilled the Royal Children’s are working with us.
“They have separated conjoined twins before, Trishna and Krishna who were brought to Australia by Children First Foundation, so that expertise and knowledge will be harnessed once again.
“We will have some of the same surgeons, the anaesthetists, the theatre staff, we will haven’t ICU team back with us again, so we are very confident these little girls will be separated successfully and soon be able to crawl, roll, jump and run as two little independents.”
Here’s how you can help Nima and Dawa:
1: Donate by phone on our toll-free number 1800 99 22 99
2: Text TWINs to 0437 371 371 to make an online donation
3: Visit childrenfirstfoundation.org.au/donate and select Twins18 as the campaign name
4: Donate by electronic transfer via your online banking system to the account details below.
Bank: Bendigo Bank
Name: Children First Foundation (CFF Gift Account)
BSB: 633-000
Account number: 163045552
Reference: Enter your full name and “twins”
To receive a tax receipt for donations made by electronic transfer, please email donations@childrenfirstfoundation.org.au with the transaction details.
‘Angels’: Hero Coles workers save mum’s life
A mother of three has opened up on how her life was saved after she suddenly collapsed while doing a routine supermarket shop.
Wildlife and traffic fears over music festival
Wildlife advocates fear a weekend music festival in central Victoria will endanger native animals including rescued joeys.