A baby boy is celebrating his first birthday today with a smile on his new face after a complex surgery removed a large mass that covered his eyes and nose.
Zakary Riegel was born with a rare condition that caused brain tissue to grow in between his eyes and outside of his face to form a large balloon-like cyst.
After his first four months of life were spent in Cincinnati Children’s Hospital, he underwent dangerous life-altering brain surgery to remove the mass that allowed his 46-year-old mother Valeka, a surgical nurse, see her son’s face for the first time.
Now the one-year-old is beginning to reach milestones such as crawling and standing, though he is at a greater risk of developmental disorders and seizures.
One-year-old Zakary Riegel was born with a mass that covered his entire face until undergoing complex surgery at four months old
The boy spent his first four months of life in Cincinnati Children’s Hospital until he grew to 15 pounds in order to have the nine-hour surgery which involved facial reconstruction
When Valeka was five months pregnant with her third son Zakary, a fetal MRI and ultrasound revealed that a tube in his brain had not closed which meant he had encephalocele.
Doctors told Valeka her son would most-likely be born with a cyst on his cheek, yet the outcome was far worse.
He was born with a balloon-like pouch made up of tissue and brain matter that covered his face from his eyes to his mouth.
Encephalocele is a rare birth defect that occurs when the neural tube, a channel that forms the brain and spinal cord, does not completely close as it should in the third and fourth weeks of pregnancy.
This results in an opening in the area of the skull between the forehead and nose or the back of skull where parts of the brain grow outward.
It is not known what causes the genetic condition that affects one in 12,000 babies in the US.
WHAT IS ENCEPHALOCELE?
Encephalocele is a rare type of neural tube defect (NTD) present at birth that affects the brain.
The neural tube is a narrow channel that folds and closes during the third and fouth weeks of pregnancy to form the brain and spinal cord.
Encephalocele is described as a sac-like protrusion or projection of the brain and the membranes that cover it through an opening in the skull.
Encephalocele happens when the neural tube does not close completely during pregnancy.
The result is an opening in the midline of the upper part of the skull, the area between the forehead and nose, or the back of the skull.
Usually encephaloceles are found right after birth, but sometimes a small encephalocele in the nose and forehead region can go undetected.
How rare is it?
Center for Disease Control and Prevention estimates that each year about 340 babies or one in 12,000 in the United States are born with encephalocele.
What causes it?
There is a genetic component to the condition, meaning it often occurs among families with a history of spina bifida and anencephaly.
Some researchers also believe that certain environmental exposures before or during pregnancy might be causes, but more research is needed.
Source: Center for Disease Control and Prevention