A boy born with part of his skull missing leaving his brain only covered by skin is believed to be the first to ‘survive and thrive’ with the rare condition after his mother rejected advice to abort him.
Lucas, born at 35 weeks weighing 6lb 5oz, was not expected to live beyond just a few hours due to his exencephaly.
His mother, Maria, was immediately advised by doctors to terminate her pregnancy at just ten weeks, however, she said she couldn’t go through with the abortion.
She said her decision was “always a battle back and forth” with doctors who “didn’t give any hope at all”.
Following their decision to choose life and not abort their baby, Maria and her husband, Augusto, revealed they were handed a list of funeral homes from doctors and were advised to make arrangements.
On the day of her induction, Maria prepared her three daughters for what she thought would be their baby brother’s first and last day to meet them.
However, thanks to a pioneering operation, performed to remove fluid and damaged parts of his brain, Lucas is thought to be the first baby able to survive the condition for more than a couple of days.
Dr Vogel, who performed the procedure, said: “I had to push for the first couple days [for] the surgery to get done.”
Amazingly, Lucas’ condition stabilised and he was allowed to go home only a week after the procedure.
He is now seven months old and awaiting surgery to mould a skull over his brain, improving the appearance while further protecting his head.
Because Lucas is the first baby with exencephaly to survive so long, doctors are unsure how the condition will impact his physical and mental health as he grows older. He is otherwise healthy, and has begun to eat baby food and cereal, to the delight of his mother.
Dr Vogel and his team are determined to give the infant the best chance of survival possible. Dr Vogel said: “It’s just awesome to be a part of something that is so unique, and to really know there’s a promising future for Lucas.”
“Lucas is going to be with me for a long time,” the doctor added. “Every time I see him, it’s just so encouraging.”
His mother said, “now he is home we feel so blessed – he doesn’t need much extra care than a normal baby and we just have to make sure we are careful with his head. He came to complete our family because this is the baby boy we’ve been waiting for.”
“His sisters enjoy singing to him and kissing him,” she added.
While Lucas’ situation is unique, medical advances mean stories like his are not and continue to provide hope and a reason to choose life. The survival rate for extremely premature babies, in the UK has doubled over the past decade prompting new guidance allowing doctors to try to save babies born as early as 22 weeks into a pregnancy.
