Having children born with their heads attached is extremely rare, but having them born with their heads attached and their veins intertwined, in a condition known as Craniopagus twins, is not just rare, it’s unbelievably rare and rare, probably the rarest thing you can ever think of.
That’s how much Nelly and Neeva are different from others, as the Suriname twin girls are considered Craniopagus twins.
Craniopagus twins are conjoined twins that are fused at the cranium. The union may occur on any portion of the cranium, but does not primarily involve either the face or the foramen magnum; their brains are usually separate, but they may share some brain tissue.
Now 18 years old, the twins have adapted to this kind of life, where they live in the Netherlands with their beloved grand sister, Rusianne.
‘When we were born, everybody thought we were going to die, but here we are now after 18 years old,” Nelly said.
But the two girls don’t share their brains, even though they share important veins that made it impossible to separate them, as the risk for death was higher in such conditions.
“We don’t share the brain, we can’t read each other’s mind, I don’t even want to know what she is thinking about,” said Neeva.
When the twins were born back in their native country, the story was extremely different. Neighbours and other people started to avoid the family, accusing them of using witchcraft.
“My mother found out that she was having siamese twins and when they were born, it was not really nice. People started to distance themselves from our family. People thought it had something to do with voodoo,” said Rusianne.
Then the family tried their luck to give the children the proper medication, as their parents wanted each of them to live independently.
“My sisters came to the Netherlands at the early stages because there was a possibility to separate them. What’s what our parents wanted, they wanted a better life for both of them obviously,” she said.
It was discovered that the twins share an important vein in their heads that would almost guarantee death if the efforts to separate them are pursued.
“They have an artery that keeps them alive, if you wanted to separate them you would have to cut that and when you do that, you might as well bury them and we don’t want that,” Rusianne explained of their condition.
Now the girls have been living a very different life, given that they have to adapt to living and doing everything together
We have been walking like this our entire life
Rosianne really supports us, when people are overreacting, she always stands up for us, we really like her.
The two have to be together all the time, and for one to do something, another one must try to be cooperative, and that’s the only way they can survive.
One of the biggest problems they face is that they are mostly scrutinised and looked upon when they are out with their grand sister. However, they chose to set up a new strategy that can help the community with that problem.
“We have our own YouTube Channel so people can get to know us. People will stop staring and find out that we are really sweet girls. We are not just really the girls with disabilities,” said Nelly.
“There you can see pictures of us and videos of how we do our hair and concerts we have been to. We can see people’s reaction. It’s good to know that people don’t just respond negatively,
They have different personalities and they are very different girls and I am happy that they want to show that off,” added Neeva.
Doctors had initially informed their parents that the furthest these twins can make it is to 10 anniversary.
“They were expected to make it to 10 years old but they surpassed that life expectancy and they are now 18 years old and you look at their life and think wow, who would have predicted that when you were born, you would make it to 18 years old,” said their grand sister, who is their daily caretaker.
“They have accomplished a lot and they have grown as people so I think that the future can be positive,” she added.
The twins have their frustration at times, especially when they are supposed to do different things yet it is impossible. Also watching TV and doing other activities might seem difficult, even though they attest that they have been familiar with this kind of life.
For instance, when they are watching TV, one can use the big mirror to watch the reflection from the TV set, as the two can not possibly be able to watch it in the same direction at the same time.
Also when they want to brush their teeth, one will have to do it first then be replaced by another one. That’s how they do all other activities that require them to wait for each other.
Despite the difficulties, none of them would like to change and be independent, they prefer to stay together, as they told Born Different.
“We would want to get separated as long as we are healthy. That’s the most important thing, plus another advantage, when we get a birthday, we get twice as many presents,” said Neeva.
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