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.
Lucas Santa Maria, who is seven-months-old, was not expected to live beyond just a few hours due to exencephaly.
His mother, Maria, was advised to terminate her pregnancy at just ten weeks - but she said she couldn't go through with the heartbreaking choice.
Lucas was born at 35 weeks weighing 6lb 5oz. But Mrs Santa Maria, 30, and her husband, Augusto, 31, of Garfield, New Jersey, claim they were handed a list of funeral homes and advised to make arrangements.
To everyone's shock, Lucas' stability increased, and he was able to eat and breathe unaided.
After having surgery to remove fluid and damaged parts of his brain just four days after his birth, Lucas was able to go home.
He is awaiting surgery to mould a skull over his brain, which is currently only protected by his skin and extremely fragile.
Lucas Santa Maria was born with part of his skull missing leaving his brain only covered by skin. He is believed to be the first to 'survive and thrive' with his rare condition
Mrs Santa Maria and her husband, Augusto, 31, of Garfield, New Jersey, claim they were handed a list of funeral homes when Lucas was born (pictured)
Mrs Santa Maria, a stay-at-home mother-of-four, said: 'I found out about his condition on my first ultrasound when I was just ten weeks pregnant and was told that he would most likely die in my uterus or at birth.
'They recommended that we had an abortion which was devastating since they didn't give us any hope at all and said that he was incompatible with life.
'I had never thought about having an abortion before but we were forced to consider due to the circumstances but it was something that I couldn't bring myself to do.
'I thought if Lucas wasn't going to live he can pass in my uterus without me having the regret that I may have stopped my son from having a life.
'The doctor's told us this made him the first in the world to survive and thrive with this rare condition.'
Exencephaly is considered a lethal brain development abnormality that is discovered during pregnancy.
It's characterized by loss of brain tissue and top of the skull - the calvarial - making a baby unable to survive outside the womb.
The incidence occurs one in every 33,000 pregnancies, according to research.
It's a type of neural tube defect (NTD), of which approximately one in 1,000 babies are born with.
Worldwide, 300,000 or more infants are born each year with NTDs, and NTDs result in more than 70,000 deaths annually.
Exencephaly is a precursor to anencephaly, a serious birth defect in which a baby is born without parts of the brain and skull.
Anencephaly occurs no later than 24 days' gestation.
Anencephaly happens if the upper part of the neural tube does not close all the way.
This often results in a baby being born without the front part of the brain or the cerebrum - the thinking and coordinating part of the brain. The remaining parts of the brain are often not covered by bone or skin.
Anencephaly and exencephaly are both fatal and cannot be treated.
Exencephaly is usually discovered in the embryo and is considered a lethal brain development abnormality. It occurs one in every 33,000 pregnancies, according to research.
The condition is characterized by the calvarial - the top of the skull - and brain tissue not forming. A baby is unable to survive outside the womb.
If a baby is not stillborn or terminated, it normally leads to anencephaly, a serious birth defect in which a baby is born without parts of the brain and skull.
There is no known cure or treatment for exencephaly or anencephaly. Almost all babies born with anencephaly will die shortly after birth.
For the rest of the pregnancy, Mrs Santa Maria had regular check ups, anatomy testing and ECGs. She said: 'My pregnancy continued as normal, until I was induced at 35 weeks.
'At this point I knew he was still alive as, prior to me pushing, I could feel him moving around a lot.
'As soon as he was born I heard the doctor say that