Deanne Stein, News9.com
OKLAHOMA CITY -- Parents of a newborn child come to expect the typical struggles of caring for a baby: the overnight feedings, lack of sleep and constant care they need. But for Jennifer Hall of Oklahoma City, her struggles went beyond typical when her newborn son, Braden, wouldn't eat at all.
"He was starving, it was a horrible nightmare," Jennifer remembers. "He just kept dropping weight."
So Braden's doctor put him on a NG (naso gastric) feeding tube which ran through his nose to his stomach. After several weeks, the tube wasn't helping. Doctors discovered Braden was aspirating every time he swallowed and decided instead to put him on a G (gastric) tube. The G-tube is surgically placed directly into the stomach.
"I was scared to death and I didn't want to do it," said Jennifer. "It just sounded horrible to me."
Although she was hesitant, Jennifer said she knew she had to do it for her son to survive.
"We got the G-tube put in and he started gaining weight like crazy and there was no more screaming or fighting," she said.
The Hall's feed their son with a syringe through his feeding tube every two hours. At night, Braden has a pump that feeds him throughout the night in small doses to ensure he gets all the calories he needs each day.
"It was a new thing for me and it scared me at first," said Jennifer. "But you get the hang of it. It's not ideal but it's life-saving."
Braden is now 19-months-old and has been 100% tube fed since he was one month old. However, it wasn't until he was a year old that doctors finally knew why he had the feeding problems. Jennifer said Braden was diagnosed with an extremely rare genetic disorder called Costello Syndrome. One of the complications of this disorder is the fact Braden cannot eat food by mouth.
"It was devastating at first, just to know he's going to have a life full of struggles," said Jennifer.
Those struggles include being both developmentally and mentally challenged. But Jennifer said the two biggest concerns with Costello Syndrome is an increased risk of developing cancerous tumors and heart problems. While doctors say Braden could grow out of his feeding problems one day, he will never be able to live independently.
"We had to change our thinking on how we were going to deal with him and our lives were going to change as well," Jennifer said. "But at the same time, I realized I can't plan everything, I just have to take it one day at a time."
Jennifer said she has two online support systems that help her get through the day-to-day trials of caring for Braden. One website is about Costello Syndrome and the other is through the Feeding Tube Awareness Foundation. In fact, the foundation is celebrating its 2nd Annual Tube Feeding Awareness Week, February 5-11.
"It made me feel better, to see there were tons of other parents that were going through the same thing," she said. "Maybe through this awareness, it will help people like me that didn't know this [feeding tube] was an option."
Jennifer and her husband, Colby, both continue to work outside of the home, having family close by to help with the care of Braden and their 4-year-old daughter Cameron. She said despite the challenges they face each day with Braden, they try to keep their family life as "normal" as possible.
"He is the sweetest, toughest little guy in the world," she said. "To think of all the things he's going through, and to still see him smiling all the time, just blows me away. I'm blessed beyond belief to have him as my son."