Happily anticipating her arrival, Mariah Garland and Robert Downs were excited to finally meet their daughter, Natalie, on Nov. 22, 2014. The young parents from Barberton felt so blessed to have such a happy and healthy baby girl — or so they thought.
During a routine 1-month wellness checkup, Natalie’s head circumference had gone from the 22nd percentile at birth to the 93rd percentile.
“A few weeks after her birth, I noticed her forehead kept getting bigger and bigger,” said Garland. “We knew something was up when we put on her Christmas dress, which fit perfectly, but the matching bow headband was super tight.”
Due to Garland’s concerns and the sudden jump in growth curves, Natalie’s pediatrician, Dr. Lisa Eggleston of Akron Children’s Hospital Pediatrics in Barberton, scheduled an appointment in the hospital’s radiology department for a head ultrasound the next day.
“Natalie was not showing any other signs of increased intracranial pressure, such as lethargy or irritability, except that she had started spitting up,” said Dr. Eggleston. “It wasn’t a clear sign something was seriously wrong with Natalie, but crossing that many percentiles that quickly needs to be evaluated.”
Unfortunately, their fears became reality. Doctors found an arachnoid cyst in Natalie’s brain, which was causing hydrocephalus, a buildup of cerebrospinal fluid in the cavities deep within her brain. The excess fluid can increase the size of the ventricles and put undue pressure on the brain, which can damage brain tissues and cause functional impairments.
Natalie was sent to neurosurgery immediately.
On Jan. 13, 2015, 5 days after her well visit, 7-week-old Natalie underwent her first brain surgery. Dr. Tsulee Chen, Akron Children’s director of Pediatric Neurosurgery, and her team surgically went in and poked several holes in the cyst to drain it and allow fluid to flow freely from the cyst into the normal cavities in her brain.
“Because young babies tend to heal very well and quickly, the holes would likely close back up and deem the surgery unsuccessful,” said Dr. Chen. “But, her parents and I elected to try it in hopes of avoiding a permanent shunt.”
Much to everyone’s dismay, the holes soon closed up and Natalie’s head continued to grow quickly, becoming twice the size it was originally.
Four days later, Natalie underwent another surgery to place a shunt in her brain to continually drain excess fluid to her stomach, where her body would reabsorb it, and keep pressures normal.
“She’s a fighter,” said Garland. “Before every surgery, she went in smiling and giggling and came out the same way. She was such a happy baby. She smiled through it all. She never once seemed like anything was affecting her.”
Her parents thought their worst nightmare was over but, a year later, Natalie started to exhibit symptoms again. After Natalie woke up from her nap the following February, her speech was slurred and she seemed uncoordinated. A few hours later, she began vomiting repeatedly.
Garland brought her in to Akron Children’s immediately, and doctors found the pressure in her head had once again increased. The cyst that Dr. Chen had drained, now had scar tissue growing up around it and fluid was building up again. So, Natalie faced a 3rd surgery.
“Every time I called Dr. Chen’s team I always got a response right away — even a year later,” said Garland. “They were always there to answer my questions. It was reassuring and a necessary comfort during this stressful and difficult time.”
On Feb. 23, 2016, Dr. Chen went in and drained the cyst once again and inserted another catheter, which she connected to the shunt to continually drain any fluid buildup. This necessitated a separate — and much longer — incision.
“At this point, Natalie’s hair was starting to grow long and I worried about how it would look with a huge scar across the entire side of her head,” said Garland. “Now, you wouldn’t even know that she’s had 3 brain surgeries. The hair has grown right over the perfect little line down her head.”
Today, Natalie sees Dr. Chen once a year to check on the shunt and make sure her fluid and pressure levels are normal.
Natalie is a smart, healthy 3-year-old who loves to run, jump and play. Funny enough, her favorite activity is playing doctor and performing surgeries on her dolls. She wants to be a nurse when she grows up.
Garland and her family count their blessings every day that the hydrocephalus was caught early. Natalie was born with a severe case that actually was hindering brain growth due to all the fluid buildup.
If left untreated, hydrocephalus can be fatal or result in severe neurologic issues or developmental delays due to brain damage. Because of a routine well visit, Natalie didn’t suffer from any complications because it was caught early and treated immediately.
“We’re so thankful,” said Garland. “It was a scary time for all of us. Especially when you’re dealing with brain surgeries on a baby, there were so many things that could’ve gone wrong but didn’t.”