Lubbock citizens aim to prevent Fetal Alcohol Syndrome
It's like playing Russian roulette with alcohol.
That is how Dr. David Jenkins, a member of a diagnostic team in Lubbock, describes Fetal Alcohol Syndrome: a 100 percent preventable birth defect.
The Lubbock FAS diagnostic team reports from 2008 to 2014, out of 684 children screened, 219 were exposed to alcohol in the womb, which can cause permanent brain damage.
Nearly 40 of these children have FAS.
Jennifer and David Taylor in Lubbock, know all too well the devastation this can cause for a family.
"We knew that Ashley would have some issues with delays from when we first met her, because of the situation she was in," Jennifer said.
Fifteen years ago, Jennifer and David Taylor chose to foster a little girl named Ashley, and eventually adopted her into their world.
"Some of the neglect, some of the issues with her size and things like that….we were totally prepared to deal with that," Jennifer said.
Ashley was taken from her mother at a homeless shelter when she was about one year old, Jennifer said, clinging to a bottle of curdled milk.
"She was so malnourished," she said, "her features were distorted."
But it is what happened to Ashley inside the womb, that was far more damaging.
"I remember when the doctor told me," Jennifer said, "and I literally just collapsed."
After a long journey with multiple doctors, Dr. Sabi Nabulsi with Pedi Med Center in Midland finally diagnosed Ashley with FAS.
"I knew that it was a lifelong…sentence, if you will," Jennifer said. "I knew that it was permanent brain damage."
Nabulsi noticed Ashley had FAS facial features – such as a thin upper lip and a smooth philtrum (the dip above the lip).
"Every time people drink [while pregnant] it creates holes in the brain," Nabulsi said.
People with FAS primarily have damage to the front part of the brain, Nabulsi said, that controls problem solving, judgment, and more.
The most damage is to the corpus callosum, he said, which processes information from the left to the right side of the brain. This causes the person to be immature socially.
However, Nabulsi said drinking while pregnant has a "buckshot" effect that causes widespread damage all over the brain – affecting emotions, motivation, memory loss to the point of lying, and more.
More information: http://www.nofas.org/wp-content/uploads/2014/05/FASD-identification.pdf
"From the minute her feet hit the floor, we knew if it was going to be a good day or a bad day," Jennifer said. "She would fight us from not wanting to get up, not wanting to go to school, not wanting to (brush) her teeth, not wanting to (get) dressed, clothes on inside out or backwards, or not at all. Dropping her food on the floor, throwing her food, throwing a fit, barely getting through breakfast, screaming, crying…that's just through breakfast."
But through the constant meltdowns and compulsive lying, Jennifer chose to not to be angry at Ashley's mom.
"Her situation was different," Jennifer said. "I don't know that she was completely educated about drinking during pregnancy."
This is why Jennifer chose to share her story of raising Ashley in a book she published in 2010, titled Forfeiting All Sanity.
"We would fight this battle with everything we have," Jennifer said. "We also thought, 'Well, we're going to get out there and educate as many people as we could.'"
This means Jennifer joined the force of a team working with FAS in Lubbock far before Ashley's birth.
"Back in the 60's, when I began to learn about FAS, there was no one in town that knew anything that I could find about FAS," Betty Dotts said.
When Dotts discovered a close family member had FAS, she researched it and shared her findings across Lubbock.
"At that time there was nobody in Lubbock that could diagnose this," Dotts said. "Different mothers began to come to me and say, 'Look, I think my child has this.'"
It was around 2003 that Betty became part a fetal alcohol syndrome task force that formed in Lubbock.
"We drew in this social worker, which was great," She said. "A nurse, a professor…different people that would have knowledge about this"
This group helped hang the "do not drink while pregnant" warning signs at public venues where alcohol is served, Dotts said. Around four years later, in 2007, TABC began to enforce these signs under law.
"Let's put them up in the restrooms, let's put them up wherever they sell liquor," Dotts said. "Something about this. The effects."
Jenkins was a special education specialist on that team, who knows the challenge of FAS in schools.
"One of the characteristics that's pretty prevalent is that ability to demonstrate to the teacher that, 'I know this, I've learned this math, I know how to read this,' and the next day, it's like it's not even there," Jenkins said. "So those kids are often challenging for teachers because the learning is not consistent."
Jenkins hopes the warning signs he helped hang will work.
"The current estimates are it's about a two-million dollar life time expense," he said, "for raising an individual with fetal alcohol effects."
Even costing taxpayer's dollars, because according to the National Organization on Fetal Alcohol Syndrome, 35 percent of individuals with FASD have been in jail or even prison at some point.
"A lot of these folks, you're not seeing that diagnosis right off the bat," said Lubbock attorney Rusty Gunter.
This makes Gunter believe that percentage is much higher.
"We need to be able to recognize that this is an issue, an organic issue, that we need to address from the defense side," he said, "and if it gets to it, the court needs to address and take into consideration when reaching either a judgment or a sentence."
These efforts to raise awareness are part of the reason Jennifer understands Ashley more than ever, six years after the release of her book.
"We have a great relationship now," Jennifer said. "We communicate much better."
At 16 years old, Ashley knows the frustration when people don't understand her. She lives in a special needs assisted living center in Lubbock where her needs are tended to, but she said life was challenging before that.
"They would push me to do something that made me really uncomfortable," she said, "and I would end up having a panic attack or an anxiety attack or a breakdown."
Ashley hopes this team effort will only increase in size to help prevent a preventable birth defect.
"I know it would mean a lot because people wouldn't hate having FAS like I did," Ashley said. "No more kids with special needs, and no more struggling and no more being socially awkward and just not knowing what to do. I don't like when people get picked on just because they're different."
While Jennifer understands that some women may struggle with drinking addictions, she hopes they will consider reading her story and understand the risk they are taking.
"We're talking about the safety of the baby," Jennifer said. "To me, there's no gray area. It's the only preventable birth defect."
To connect with Jennifer and other families struggling with FAS in Lubbock, visit https://www.facebook.com/jennifer.p.taylor.520.
For more resources and information about FAS, visit http://www.nofas.org/.
Copyright 2016 KCBD. All rights reserved.