Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
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Monroe Carell Jr.
Children's Hospital
at Vanderbilt
2200 Children's Way
Nashville, TN 37232


(615) 936-1000

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Meet Eliot
 

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Eliot Jackson is only 13 months old and already he's had eight surgeries and multiple hospital stays, though by his smile no one would ever know it.

Eliot was born by emergency Cesarean section because his head was too big for natural birth. That's when doctors discovered a fluid-filled cyst on his brain that was 9 centimeters by 6 centimeters. An abnormal amount of cerebrospinal fluid (CSF) had also accumulated inside his brain ventricles.  

His parents learned he had a condition called hydrocephalus, which can affect any person at any age. Although it's as common as Down syndrome at birth, not many people know about it, and that included Eliot's parents. Often, hydrocephalus is caught on an ultrasound when the baby is still in utero. But that didn't happen in the case of Eliot's mom, Elizabeth Jackson.

She had had no reason to believe her son was anything but healthy.

Born at another local hospital, Eliot was transported to Monroe Carell Jr. Children's Hospital at Vanderbilt where he could receive the care he needed.

"I remember being taken to say goodbye to him," Elizabeth Jackson said. "I remember them telling me he had hydrocephalus. I had never heard of hydrocephalus. When I went to the NICU, that's where I got my education. A few days into everything I realized (the cyst) was centimeters not millimeters. He had water on his brain in the ventricles. I was in shock when it all registered - emotional and physical shock."

Elizabeth Jackson soon realized that hydrocephalus was a lifelong disease. There are also few treatments for the condition, which affects more than 1 million Americans.

Hydrocephalus can result in significant intellectual, developmental and physical disabilities as well as cause seizures.

The most common therapy - a surgically implanted shunt to drain fluid in the brain - was developed in the 1950s. In addition, no significant improvement or progress has been made in the last 50 years for hydrocephalus treatments, preventions or cures, according to the Hydrocephalus Association.

Eliot had his first surgery to put a shunt in when he was 6 days old to drain his cyst. But fluid in the brain ventricles remained, requiring a second shunt. Usually another surgery is needed within two years of placing a shunt in a child or adult.

Due to various complications, Eliot has already had eight surgeries in his first year of life to replace and reposition his two shunts. His last surgery was in April.

Since, he has been at home enjoying his parents and siblings, including two older brothers, 8 and 6, and an older sister, 4. He goes to physical therapy and has developmental therapy at home.

"He's the sweetest thing. He doesn't act like he has had as many surgeries as he's had," his mom said. "He's on target with oral and cognitive skills; it's growth and motor skills where we're behind. It's a matter of getting him strong."

The Jacksons are also busy raising awareness about hydrocephalus, hoping more people learn about it and realize that it's not fixed in one surgery.

The lack of progress in research and treatment is disheartening. The family organized a team for the first-ever Nashville Hydrocephalus Walk on Saturday, July 28, to do their part to get the word out. Elizabeth Jackson would also like to see the condition renamed to something more readily recognizable.

"There is a huge awareness gap," Elizabeth Jackson said. "You worry about Down syndrome and all these things during pregnancy, but you have no clue about hydrocephalus. This is an opportunity for us to make a statement. Priority number one in my heart for the walk is making sure people find out about it."

Faith, friends, family and hospital staff have helped the Jacksons through the past year.

"I've had to learn a lot in the past year and thank God I've been surrounded by great doctors, nurses and support staff who have helped me figure these things out," she said. "Our faith has helped tremendously. We're really thankful to God for where we're at. We're learning from it and making the best of it. We've learned to live day by day."


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