Every parent’s nightmare: Doctors give their newborn only a few hours to live

Warning: This article contains images that some readers may find disturbing.

Until nine years ago, Ronaldo and Jocilene Marchioli and their two children were leading a perfectly normal life in their hometown of Barra de São Francisco in Brazil. But when Jocilene gave birth to their third child, their lives changed dramatically. Their newborn daughter Vitória suffered from a very rare condition known as Treacher Collins syndrome.

Treacher Collins syndrome, also known as Frnceschetti Zwahlen syndrome or Berry syndrome, is a hereditary condition that prevents a fetus's facial bones from growing properly in the womb. This leads to severe deformities of the head, neck and face.

The severity of the deformation varies greatly and in some cases the chances of correcting it with reconstructive surgery are very good. Unfortunately for Vitória, this type of surgery was not an option.

Immediately after birth the doctors could see that Vitória was suffering from a particularly severe form of the syndrome. Tests showed that over 40 bones in her face had failed to grow together. The findings led doctors to believe that the poor infant only had hours to live.

The Marchiolis left the hospital with little hope and were even advised to make funeral arrangements for their newborn daughter. But Ronaldo and Jocilene weren't about to abandon hope so easily.

The couple refused to give up on Vitória and decided to fight as hard as they could to keep her alive. Her lack of facial structure made it difficult for her to do anything with her mouth and taking care of her proved to be a monumental task. She could only consume food through a tube that was implanted in her neck and Ronaldo and Joceline also had to watch her around the clock to make sure she didn't suffocate.

But with amazing strength and courage the family managed to beat the odds and prove the doctors wrong — in August 2017 Vitória celebrated her ninth birthday.

Their triumph is incredible, but they also have to live each day never knowing how much time Vitória has left. She requires constant care and treatment to stay alive and it's unclear how long she can continue to survive. Day by day the family faces their challenges together in an attempt to make Vitória's life as comfortable as possible.

Because taking care of their daughter is so time consuming, Ronaldo and Joceline are no longer able to work. They still, however, want to improve Vitória's quality of life with special treatments and operations. To help cover the costs for this, they've set up an account to take donations and have already received enough money to pay for eight operations.

Vitória will need several more surgeries to keep her alive and hopefully improve her condition. If all goes well, she may actually be able to lead something close to a normal life. Anyone who wants to help this little brave little girl can donate here.

For doctors, Vitória's case remains a puzzle. But for her family, it's simply a miracle and one that they'll be eternally grateful for.

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