Baby’s brain expands beyond skull: Overcoming dire prognosis against all

Omobola Gordon, 25, had a seemingly normal pregnancy until her 20-week scan revealed a problem. The medical staff struggled to measure the baby’s head, leading to a referral to a specialist. The specialist identified an opening in the skull, causing an encephalocele, a condition where brain tissue protrudes outside the skull.

Omobola and her husband Checotah, 26, from Houston, Texas, were given the option to terminate the pregnancy due to potential malformations in the baby’s brain or skull. However, they chose to continue the pregnancy, knowing they wouldn’t have a full understanding of their baby’s condition until birth. They also prepared a palliative care plan in case their child couldn’t survive after birth.

Defying the odds, their son Ozzie was born on October 1, 2018, weighing 7lb 5oz. He had an encephalocele covering a third of his face, but his skull was complete, albeit misshapen. Two days after birth, they were discharged from the hospital with hospice nurse support.

At four months old, Ozzie underwent surgery to remove the encephalocele and has been defying doctors’ expectations since. Though he can’t crawl or toddle yet, he babbles and smiles like any other baby, with his infectious smile warming the hearts of everyone who meets him.

Omobola shared that Ozzie is developmentally delayed. He doesn’t crawl or walk but babbles up a storm and engages with his surroundings, demonstrating a sense of direction unexpected in babies with his condition. Despite suffering from seizures, medication helps manage them. Tests regarding his vision and hearing have been inconclusive, but his interactions suggest he is aware of his environment.

What is an Encephalocele?

An encephalocele is a rare congenital neural tube defect where part of the skull hasn’t formed properly, causing brain tissue and associated structures to protrude outside the skull. The protruding sac may be covered with skin or a thin membrane. Encephaloceles can be categorized based on what protrudes:

  • Meningocele: Only the brain’s covering (meninges) is outside the skull.
  • Encephalomeningocele: Both brain tissue and meninges are outside the skull.

The condition can affect any area of the skull, commonly the back of the head, top of the head, or nose/forehead region.

Causes of Encephalocele

Encephaloceles result from issues in the early development of the neural tube, which forms the brain and spinal cord. If the tube fails to close properly, it leads to neural tube defects. The exact cause is unclear, but folic acid intake can reduce the risk. Encephaloceles typically develop sporadically and aren’t inherited, though they can be associated with syndromes like Dandy-Walker syndrome and Chiari malformation, which may have genetic components. Family history of neural tube defects increases the risk.

Encephaloceles occur in 1 to 2 out of every 10,000 births. The defect’s location can be influenced by racial background and gender, with Western babies more likely to have posterior encephaloceles and Eastern babies anterior encephaloceles. Females are more prone to posterior encephaloceles, while males tend to have anterior ones.

Omobola’s Journey

Sharing her experience has helped Omobola navigate the emotional and mental challenges of Ozzie’s early life. Initially in a dark place, she found that sharing their story brought support and understanding from others. Omobola, originally from London, notes that while they do receive curious stares, they are open to educating others about Ozzie’s condition.

The couple has received gratitude from other special needs parents, reinforcing their decision to love and care for Ozzie. They hope to give him the best life possible and that he will be accepted by society despite his differences. Omobola emphasizes the importance of community support for families facing similar challenges, urging them to seek emotional and mental support from those who have experienced similar journeys.

For more information, visit Omobola’s Instagram page.

Here are some heartwarming moments captured:

  • Omobola and Checotah with their son Ozzie, showing the family’s resilience and love.
  • Ozzie’s star smile, which warms everyone’s hearts.
  • Checotah holding Ozzie after he was born, a testament to their hope and strength.

Their story is a powerful reminder that miracles do happen, and special children deserve as much love and care as any other.

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