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Lifesaving surgery gifts Choity new beginning

choity 2

Grant McArthur, Health Editor, Herald Sun
26 November 2016

A girl born with three legs and missing vital parts of her body has been rebuilt in a remarkable Melbourne operation.

During a seven-hour Monash Children’s Hospital operation believed to be a world-first, surgeons reconstructed the lower body and organs of two-year-old Choity, who was brought from Bangladesh by the same people involved in rescuing formerly conjoined twins Trishna and Krishna.

It was only midway through the extraordinary November 14 surgery the full extent of Choity’s situation was realised — the Bangladeshi baby was actually a twin who had “soaked up” the lower body of a sister so it became a living part of her.

“Her upper body was normal — there was one heart, two lungs, normal liver and two kidneys — but below her pelvis there was two sets of organs.
“It was like having double parts of a person grown into your pelvis, like a bad twin.

“She was essentially born with a third leg that grew out of her pelvis. It moved, it had muscles and nerves, but it would have been difficult for her to control it.”

When Choity was born stunned doctors had no idea what to do, or even what to say to her mother.

Responsibility to explain the unexplainable was passed to Choity’s father Asad Fakir.

Facing a volatile mix of a past tragedy and cultural stigma, Choity’s mother Shima Khatunto was kept in the dark, only learning of her daughter’s condition when she finally met her five days later — after all, just how do you tell a mother her beloved daughter has three legs and is missing vital parts of her body?
“When I saw the baby I was very excited, but when I saw her third leg I was very upset because I lost my first baby two years earlier as soon as she was born,” Shima said.

“When I saw my second baby with such a deformity ... I was very upset.”

Born in one of the poorest areas of the poorest nations, with deformities never before seen, nobody knew what little Choity’s future was — or if she even had one.

Garment factory workers living in a slum in the Gazipur industrial belt 40km north of central Dhaka, Shima and Asad had already faced the tragic loss of a child soon after birth.

But when Choity was born on January 17, 2015, they were already dreaming of her future going to school and university.

Having had a Caesarian, Shima was not awake when her daughter arrived to share the shock of those around her.

As well as having a functioning and moving third leg connected to centre of her pelvis, her lower body had no outward signs of the systems needed for life.

Where the body’s normal openings should be Choity had only skin, like a Barbie doll.

While Shima recovered it was decided to protect her from the dire situation.

Assoc Prof Kaniz Hasina was one of the first people to see Choity when she was hastily sent to his paediatric surgery unit at Dhaka Medical College and Hospital.

“At first, when I saw Choity I knew it was a rare case. I felt I need to help her out because it’s not every day you see a case of parasite twin,” he said.

“People did not have that much of bad reaction (but) the moment I met Choity and her mother I felt her mother was isolated from her family.

“This behaviour is very common in our society as people sometimes own superstitious beliefs.

This type of baby is considered as the resultant of parent’s sin and most of the time women are always blamed.

“As Choity’s father was not present when I met them, my thoughts went in that direction. But later I realised that people thought she just had an extra limb which can be separated.”

Over the following days it became apparent Choity had a fully developed digestive system, though Assoc Prof Hasina did not initially believe she was a “super serious” or urgent case.

“When I found her she was few days old and after discussing with a board of doctors we decided that she would be needing operation when she will be six months aged. And when she was only eight days we did her the first operation to separate her third limb,” Assoc Prof Hasina said.

As well as removing most of her middle leg at just eight days old, the Bangladeshi surgeons created a vital renal passage for Choity.

Without any external openings there was nowhere for Choity to pass waste, but when Asooc Prof Hasina’s team opened her abdomen they could see she did have a bladder and could digest food, so fitted a channel passing out through a hole they created next to her left leg.

Critically, the Bangladeshi surgeons also stitched her bowel to the inside of her skin. The crude measures further deformed Choity’s body, but saved her life by stopping toxic waste leaking into her body and causing fatal infections.

Six months later surgeons again operated to fit Choity with a colostomy as well as attempting to reconstruct her pelvic bone, however the procedure was far from successful and there was nothing more anyone could do.

When Australian doctors saw Choity doubts intensified about whether anything could be done.

In a country with massive hygiene issues, Choity was a fatal infection waiting to happen.

But somehow she survived.

Atom Rahman efforts to save conjoined twins Trishna and Krishna made him a prime candidate to try and help Choity.

In June 2015, workers operating a charity mobile health clinic in the slums first met Choity and were desperate to help.

The clinic was established by Atom Rahman, a businessman who splits his time between Melbourne and Dhaka, and already had an agreement with the Dhaka hospital to take over the care of children needing more extensive treatment.

While the hospital knew there was nothing anyone in the developing world could do to help Choity, they were aware of Mr Rahman’s relationship with Australia’s Children First Foundation and their famous efforts to save Bangladeshi conjoined twins Trishna and Krishna.

They referred the impossible case back to him for international help.

“We talked to doctors and they said ‘this can’t be done in Bangladesh’,” Mr Rahman said.

“They would have tried, but maybe they would have killed the child. They do not have the expertise nor do they have the after care.

“Without the operation there would have been infections — I mean how long can you keep this outside?

“She would have had a very, very bleak future. She would have had no future, to be honest.”

When Mr Rahman contacted CFF is was obvious she fitted the criteria for help under its Miracle smiles program: needing-life changing surgery that is not available in her country.

It was much less certain if there was anything that could be done to help her.

As Mr Rahman organised scans to gain a clearer idea of what they up against, CFF turned to the man most suited to undertake such a complex operation.

“We forwarded the case onto a surgeon, to Chris Kimber, and he modelled the case to see if Monash would take it on. He came back with a short answer: ‘yes’,” CFF chief executive officer Elizabeth Lodge said.

“Chris has taken difficult cases before and Monash is a hospital that will take on difficult cases, so he was the first surgeon we turned to.

“Chris likes to take on a challenge, and Choity certainly was that.”

Although he’d agreed based on the most basic scans, Assoc Prof Kimber was desperate to talk with the Bangladeshi surgeons to know what he was really dealing with.

But just trying to identify who had operated on Choity, track them down and organise a Skype chat was a two-month battle for CFF to organise.

They then had to battle the bureaucracies of two nations to produce a passport and visa for a little girl who did not legally exist, have a birth certificate, or even a surname.

“Because they are so poor it is very easy for documents to be produced incorrectly, so her name was not the same as her passport and even getting her out of the country was a problem,” Ms Lodge said.

“When these cases come along with such a humane element they (immigration departments) are very empathetic with what we are trying to do but at the same time it has to be legal as well.”

Eventually the diplomatic willingness to help the little girl matched the generosity of the medics and, on July 27, Choity and Shima landed in Melbourne.

As soon as the Australians could see Choity with their own eyes doubts intensified about whether anything could be done.

The reality of her condition was worse than the scans indicated, and it was realised that she had extremely low vision.

Over the coming weeks meetings of up to a dozen surgeons in one room debated different ways to reconnect and rebuild Choity’s body, but scans could only reveal so much.

As he began consulting with leading surgeons in the US, UK and Europe, Assoc Prof Kimber needed more information about what was really going on inside Choity’s mysterious body.

On September 12 the Monash team undertook exploratory surgery in Choity’s abdomen to see what scans not pick up.
As CFF hosted guests at its gala ball on October 8 to raise funds for its work Assoc Prof Kimber delivered an even better gift: it was decided Choity could be fixed.

“Chris in part knew what he was facing — though, as we later discovered, not 100 per cent,” Ms Lodge said.

“It really struck me about the man and the hospital and all of us working together, being respectful of Choity, her family and her culture.

“She wasn’t a little girl who lived on Clayton Rd. She is going back to Bangladesh in the village, so we have to think about what it looks like when she returns.”

Before entering the theatre at 8.20am on November 14 with months of planning behind him, Assoc Prof Kimber points out that this is not going to be a stressful process, and that there will not be “any big moments”.

All that changed at 10.10am.

During the first stages of surgery the team had removed large sections of bone remaining from the top of Choity’s third leg, but retained the leg muscles to use as part of her new body. They then cut away cut away large sections where her middle hip was so she can have a body shaped like every other girl.

But, as the sleeping girl receives mild electric shocks to tense her muscles and show which can be incorporated into her redesigned lower body, surgeons glimpse a huge surprise.

“Wow, wow,” Assoc Prof Kimber exclaims unexpectedly.

“This is incredible.

“We’ve never seen this — we’ve actually found another set of muscles.”

As the operation continues they discover not one, but two sets of muscles to build a rectum with. Soon they uncover two complete anuses hidden deeper inside her body.

As they look in other areas the Monash team find two vaginas and begin to appreciate that there are essentially two sets of organs — and two bodies — coexisting inside Choity’s lower abdomen.

Vascular surgeon Mr Roger Bell is brought into the theatre to examine the unprecedented.

The full team including Juan Bortagaray and observing surgeons from Bhutan, Cambodia, Myamnar and Fiji literally go back to he drawing board, using a green marker to sketch Choity’s unique anatomy on a whiteboard.

“Her upper body was normal — there was one heart, two lungs, normal liver and two kidneys — but below her pelvis there was two uteruses, two vaginas and two rectums and two anal canals that just went nowhere,” Assoc Prof Kimber says.

“It was like having double parts of a person grown into your pelvis, like a bad twin.”

“She was essentially born with a third leg that grew out of her pelvis. It moved, it had muscles and nerves, but it would have been difficult for her to control it.”

Now knowing exactly what they are dealing with, the reconstruction plans are revised.

Rather than locating her organs and connecting them to newly constructed outside parts of a girl’s body, Assoc Prof Kimber has to also remove some excess parts and re-engineer others.

Over the next five hours he removes one rectum, disconnects a second from the back of Choity’s bladder and moves it backwards to a normal position. He uses one set of muscles to build an anus, but leaves another set unconnected.

He then brings Choity’s two vaginas together and engineers them into a single organ, and reconstructs all the skin in her pelvis.

Choity also has two cervixes, but the decision is made to retain both to give her a double chance of becoming a mother.

“They are separate and she will get pregnant in one of them — who knows which one,” Assoc Prof Kimber said.

“We spent a lot of time thinking and working out that we had to get everything working as best we could, and not rebuild something that looked normal but never works.”

Shima is desperate to take her baby home to begin the life she once only dreamt of. Picture: Jason Edwards Choity has enjoyed a near perfect recovery since her operation.

While it may have required a mid-operation adjustment, the meticulous planning allowed Choity’s surgery to have a perfect finish.

Discharged five days later, Choity had to return this on Wednesday to have a wound attended to, but has otherwise recovered perfectly.

For Assoc Prof Hasina in Bangladesh, it is exciting to know the girl he first saved has been rebuilt.

“This type of complicated operations can’t be done in our country and when I was informed that someone is managing it for her I was very relived,” he said.

“I would be very happy if I could see her returning to a normal life.”

Shima finds it difficult to speak, but is full of hope and desperate to take her baby home to begin the life she once only dreamt of.

“I am feeling very happy inside because my baby is going to get well, and I can take her home well,” she said.

“I am crying, but it is a happiness crying.

“Before coming to Australia I was worried but, now that I am here with (CFF’s) Michelle, Pat and everyone is very nice and loves Choity, they have been so helpful.

“I hope she gets well, we take her home, so goes to school and then university to study so that she can have a normal life.”