AFTER THEIR SON, TITAN, WAS BORN WITH AN ENCEPHALOCELE AND HYDROCEPHALUS, TIFFANIE AND TRENT THOMAS VOWED TO TREAT HIM AS “NORMAL” AS POSSIBLE
by LISA PORTERFIELD THOMPSON
Titan Heath Thomas, the one and only son of Tiffanie and Trent Thomas, appeared to be a chunky, healthy little boy in all the sonogram pictures leading up to his arrival. His parents, who had married exactly a year and one day before he was born, had no inclination that Titan would face health issues and challenges for the rest of his life. They readied themselves like every other set of first-time parents: arranging a nursery, celebrating with family and friends, dreaming of his 10 tiny toes and 10 tiny fingers. It’s easy to imagine their shock when Titan was born with an encephalocele, or, according to the Centers for Disease Control, a sac-like protrusion of the brain through an opening in the skull on the back of his head. At only eight days old, Titan went through his first brain surgery.
His mom, Tiffanie, describes their feelings. “It was extremely hard for the reality to set in,” she said. “We were mad, hurt, confused as to why we had to go through all of this. We’ve asked God many times ‘Why? Why does our sweet baby have to go through such a traumatic thing being so little?’”
In addition to being born with an encephalocele, “Mighty Titan,” as he’s called by family and friends, has hydrocephalus. The Mayo Clinic describes hydrocephalus as the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. There’s no cure, but with proper treatment, issues caused by hydrocephalus can be managed.
Titan had a second brain surgery before his first birthday, and his parents made many trips back and forth to Arkansas Children’s Hospital in Little Rock for the first year of his life.
“When we first started this journey, we were going to Little Rock every three months,” Tiffanie said. “Both of our parents were amazing during the surgeries and throughout. Whether it was helping with hotel stays close to Children’s or the help we got when we finally made it home with our sweet baby, we have had such a huge support system when it comes to Titan and couldn’t be more blessed.”
Titan’s dad works at Ledwell and Sons Machinery in Texarkana, Texas. “We honestly could never thank Ledwell enough,” Tiffanie said. “The company supported us and let Trent take off time to be with his family during some of our roughest times.”
The shunt Titan had put in his brain in January of 2017 drains from his head to his stomach. He will have it for the rest of his life.
Despite all the surgeries and challenges this young family has had to endure, they are amazingly resilient. “Surprisingly, there aren’t many modifications we need from what every other child requires,” Tiffanie said. “We live each day as if it was a normal day. We get up around 8 a.m., stay in the bed playing with our puppy ‘Daisy May’ and, of course, snuggling until about 8:45. We start our day playing with toys, or hanging out outside, and try to get in a little education as well. Right now, we are practicing with flashcards and learning to count on our fingers and toes. In the afternoon, we have the dreaded nap time, and when he wakes up, it’s time for Daddy to come home. It’s not much different from a normal 2-year-old, but I guess that’s the beauty in it. We try to make our life as normal as possible.”
Tiffanie and Trent describe Titan as their Sour Patch Kid. “We definitely have our hands full with him, for sure,” she said. “He can do something he isn’t supposed to be doing, but then look up at you with those big eyes and you instantly forget what he even did. This blonde-haired, brown-eyed little boy will steal your heart in an instant!”
Despite the typical mischief of a toddler, and the joy and happiness he brings to his parents, there have been tough times for the young family in the past few years. Undoubtedly, there are more challenges ahead as they raise their precious boy.
Tiffanie and Trent draw their strength from their faith and rely on family and friends as well. “We get our strength from God, honestly,” Tiffanie said. “We have a lot of family and friends who have supported us, but if it wasn’t for God, we wouldn’t have anything. Psalms 23:4 has been a big comfort for us.”
Tiffanie also referenced the song “Thy Will” by Hillary Scott. “It gave us hope when it felt like the world was crumbling,” she said. “It says: ‘I’m so confused, I know I heard you loud and clear. So, I followed through; somehow, I ended up here. I don’t wanna think; I may never understand that my broken heart is a part of Your plan. When I try to pray all I’ve got is hurt and these four words: Thy will be done.’”
Tiffanie and Trent have advice for other families that may face similar health issues: “You’re not alone, and you should never give up hope for your child. It’s hard knowing that your child will never have a fully normal life but giving up should never be the option. Never lose faith. Oh, and never Google your child’s health diagnosis because it will always show you the worst-case scenario—every time. We learned that the hard way. We’ve learned quite a bit from this journey. The biggest thing has been patience.”
Trent is in awe of all Titan has already conquered. “This 2-year-old has been through a lot in the short amount of time he’s been on this Earth,” Trent said, “but through it all, he has come to be the sweetest and happiest little boy you’ll meet, with the biggest heart. My wife and I can’t imagine life without him.”
Tiffanie agrees. “He is all we could ever need or ask for; we’re lucky to have him.”