Baby Born with ‘Brain Outside of Skull’ Believed to be the First Survivor of Exencephaly Diagnosis : The Hearty Soul

A family in New Jersey was told that their son would not survive past birth. He was born with neural tube defect that caused the boy’s skull to stop developing in the womb. 

However, he’s beating the odds and will be celebrating 7-months on earth this month. A miracle to say the least.  

Lucas was diagnosed with exencephaly during his mother’s 10-week ultrasound, meaning that Lucas’ brain was developing outside of his skull, being exposed to amniotic fluid. This would later lead to complications in the womb. 

However, at 7-months, Lucas is currently believed to be the only person to survive with this condition. 

In an interview with Fox News, Dr. Tim Vogel, chief of pediatric neurosurgery at North Jersey Brain and Spine Center explains “Exencephaly is where the brain is outside of the skull, and it’s usually only covered by a thin layer of skin made up of one or two cells. There’s just enough protection of the brain, but it’s usually not functional. All other cases aside from Lucas are not survivable.”

This is the heartbreaking news that Maria, Lucas’s mother was preparing to tell her three daughters. 

Dr. Vogel heard about the case right before Luca’s birth, one of his colleagues at Hackensack Medical Centre was walking towards the family’s room, getting ready to discuss palliative care.

“I said, ‘Tell me more about the case, maybe there is something we can do,’”

If Lucas were to survive birth and was showing promising signs, Dr. Vogel explained that he may be able to design a surgery which would spare his healthy brain tissue from the non-functioning tissue, and potentially put Lucas on the path to thrive. 

Since the Dura, the brain’s outermost membrane, is equipped with the ability to form bones in children under the age of 18 months, Lucas may be able to complete the growth of his skull.

When Lucas was born, he was breathing on his own, and began eating – this is what opened the door for Dr. Vogel and his team to work a possible miracle.

This surgery which lasted hours at Hackensack University Medical Centre was described by Dr. Vogel as a “delicate dance between what we can do and what we need to save,”. This process included separating vessels to ensure that Lucas did not suffer a stroke, or lose any of the brain functionality that he had.

His team also worked to preserve the spinal fluid cavity so that the brain could be protected once they were done, and prevent infection from settling in. Since the operation, Dr. Vogel says that Lucas’ bone is starting to form a protective layer around the brain, and the scalp has grown over completely with hair. Future surgeries in Lucas’ near future will include taking the bone which is currently growing and shaping it around the areas where structure is lacking.

“I don’t want to interrupt Lucas’ neurodevelopment — he’s on the same path that a child his age would normally be,” Vogel said, adding that he’s started eating baby cereal and baby food. “We intervene with the best intentions and then possibly delay someone’s recovery —  I don’t want to stunt his growth or neurodevelopment.”

Dr. Vogel has further offered to work with the family on his cosmetic goals, while he does have normal facial features, the area that will need to be addressed is the top of his skull. The more bone that Lucas develops, the more of his own tissue they can use, which will likely lead to a better outcome. 

In recent visits, Dr. Vogel reports that Lucas is now trying to crawl and lift his head, which is something that babies typically master between 6 and 10-months.

“It’s remarkable for a child with one hemisphere, half a brain — it’s just amazing,” Vogel said. “It’s such a night and day difference from what they told the family was going to happen — it’s just fantastic to see it really is.”

Lucas is a story of hope. When other families are facing a tough diagnosis and turn to the internet to find information, Dr. Vogel he hopes Lucas serves as an inspiration.

“Lucas is a message of hope — it’s heartwarming but also an inspiration,” Vogel said. “So much good can come from this.”