(CNN) – Hospital staff removed Emily Bauer’s breathing tube and stopped all medication and nourishment at 1:15 p.m. December 16. Only morphine flowed into her body, as the family waited by her side in her final moments.
But the next morning, she was still alive.
“Good morning, I love you,” her mother told Emily as she approached the bed.
A hoarse voice whispered back, “I love you too.”
Emily was back.
Her family said the drug that landed the Cypress, Texas, teenager, then 16, in the ICU two weeks earlier wasn’t bought from a dealer or offered to her at a party. It was a form of synthetic weed packaged as “potpourri” that she and friends bought at a gas station.
At first, her stepfather, Tommy Bryant, said he was “fixing to whip somebody’s ass,” as he thought someone older than 18 bought it for her.
Bryant already knew she used real marijuana occasionally. “It’s not that I condoned it,” he said, adding that he couldn’t follow her around all day. Bryant enforces a strict no-smoking rule in the house, and said that if he ever caught Emily smoking, she’d be grounded.
“Had I thought that there was any chance that she could have been hurt by this stuff, I would have been a lot more vigilant. I had no idea it was so bad,” Bryant said.
“I’d never have thought we’d be in this situation. If she had bought it off the street or from a corner, that’s one thing, but she bought it from convenience store.”
Best known by the street names “Spice” or “K2,” fake weed is an herbal mixture sprayed with chemicals that’s meant to create a high similar to smoking marijuana, according to the National Institute on Drug Abuse. Advertised as a “legal” alternative to weed, it’s often sold as incense or potpourri and in most states, it’s anything but legal.
Synthetic marijuana was linked to 11,406 drug-related emergency department visits in 2010, according to a first-of-its-kind report by the Substance Abuse and Mental Health Services Administration. This is when it first started showing up on health providers’ radar, as the Drug Abuse Warning Nework detected a measurable number of emergency visits.
Who wound up in the emergency room the most? Children ages 12 to 17.
The first state laws banning synthetic drugs popped up in 2010. Now at least 41 states — including Texas, where Emily lives — and Puerto Rico have banned them, according to the National Conference of State Legislatures.
Older legislation targeted specific versions of the drug, but the makers of Spice were a step ahead.
“These drug manufacturers slightly change the chemical compound, and it becomes a different substance that’s not covered by the law,” said NCSL policy specialist Alison Lawrence. “That’s why in 2011 and 2012, we saw the states enacting these broader language bans.”
Migraines came first
CNN first learned about Emily’s story when her sister, Blake Harrison, wrote an impassioned narrative to CNN iReport. The story was viewed more than 130,000 times, shared more than 25,000 times on Facebook, and dozens of people shared comments, some supportive and others critical.
Harrison said she was surprised by how many people cared, especially on Facebook.
“You think a lot of people are going to say, ‘Oh, it’s just another person hurt by drugs.’ But so many people were sharing it. It was a common ground for people against this stuff because it’s a terrible substance.”
Emily, a straight-A and B sophomore, developed persistent migraines about two weeks before she wound up in the ICU early on December 8, said Bryant. One bad migraine even sent her to the ER, and doctors scheduled an MRI.
But anxiety and claustrophobia prevented Emily from getting the test.
Bryant said doctors at Memorial Hermann-Texas Medical Center said the migraines were possibly related to using the drug.
“We correlated the time she got migraines with the time she started smoking this stuff,” he said. “In their professional opinion, they think it’s related. But medically speaking, they don’t have a picture of her brain from before and after, so they can’t say.”
While her family doesn’t know how long she’d been using the drug, her stepfather suspected she started around two weeks before the night that sent her to the hospital.
Common side effects to smoking synthetic marijuana include bloodshot eyes, disturbed perceptions and a change in mood, said Dr. Melinda Campopiano, a medical officer with the Substance Abuse and Mental Health Services Administration.
“People can become very agitated or can be come unresponsive — conscious but not reacting normal to situations,” she said. They may also appear paranoid or describe hallucinations. Some of the more potentially serious effects include an elevated heart rate and elevated blood pressure.
Campopiano said she had never heard of a patient having a stroke in these circumstances, but she described how high blood pressure could lead to one.
“Generally, strokes are caused by restricted circulation, or a blood clot that blocks circulation. What we would be looking at with Spice, or K2, is the restrictive circulation model,” she said.
Bryant told CNN that doctors diagnosed his daughter with vasculitis, which is an inflammation of the blood vessels. The vessels going into Emily’s brain were constricting, limiting blood and oxygen flow. Campopiano confirmed that vasculitis is one of the causes of strokes of this type.
“One of the difficulties is that there’s no existing toxicology screen that can reliably detect these substances,” said the physician. “There could very well be harms out there that we don’t know about yet.”
‘She was literally just a shell’
Emily complained of a migraine and took a nap at her house after allegedly smoking Spice with friends on December 7, said Bryant. She woke up a different person.
Stumbling and slurring her words, she morphed into a psychotic state of hallucinations and violent outbursts, her family said.
They called 911 after they realized she had “done something,” some drug, said her stepfather. The Harris County Sheriff’s Office confirmed they visited the house but declined to provide details.
When paramedics arrived, they restrained her and rushed her to a Houston-area hospital, where she was admitted to the ICU.
She bit guardrails and attempted to bite those trying to help her. Hospital staff strapped Emily down in the bed, said her sister.
“We thought once she comes down off the drug, we’d take her home and show her the dangers of this drug,” said the 22-year-old. “We didn’t think it was as big of a deal until 24 hours later she was still violent and hurting herself. We realized you’re not supposed to stay high this long.”
To keep Emily safe, doctors put her in an induced coma.
After days in the sedated state, an MRI revealed she had suffered several severe strokes, said Bryant.
“In four days’ time, we went from thinking everything is going to be OK and we’ll put her in drug rehabilitation to now you don’t know if she’s going to make it,” he said.
The doctors at North Cypress Medical Center told the family there was nothing more they could do. She was sent to Children’s Memorial Hermann Hospital. Citing patient privacy, doctors at Children’s Memorial declined to be interviewed.
No consistency, no way of knowing
Knowing how different people will react to fake weed is impossible. There are a few reasons that explain why.
“You’re hearing some pretty bad things with the synthetic cannabinoids — part of that has to do with the potency. It can be 100 times more potent than marijuana,” said U.S. Drug Enforcement Administration spokeswoman Barbara Carreno.
“Anything that was truly a fake pot wouldn’t be making your heart race. I’ve heard of palpitations with marijuana, but not tachycardia.”
Carreno explained there’s no consistency or quality control from one time to the next. The people making these products can be anyone from a college kid wanting to make extra cash to an operation blending large quantities in a cement mixer, she said. Two batches made by the same person could have different doses.
CNN showed Carreno a picture of the packets of potpourri Emily reportedly used — the teen’s friends gave her family the pouches after the incident. One black wrapper adorned with marijuana leaves reads “KLIMAX potpourri” and both labels read “KUSH TM.”
“It’s definitely a synthetic cannabinoid,” Carreno said after seeing the photo.
The potpourri displays at stores also include a label that reads “not for human consumption.”
Carreno called these labels a “cynical attempt” for the distributor to dodge the Controlled Substances Analogue Act, which covers any chemical similar to controlled substances such as cocaine or marijuana. It states that substances mimicking an existing illegal substance, such as marijuana, are also illegal.
“Everything about this is a lie,” she said. “They’re not potpourri. They’re called that as a smoke screen for people naive to drugs and not to admit that it’s drugs. But you can see it that they are.”
From joy to nightmare
Up until December 13, Emily had been in an induced coma the whole time, said her stepdad. Her only movements were involuntary reflexes.
“Seeing her in the hospital, she was literally just a shell. There was nothing in her eyes. She was just lying there alive minimally,” said Harrison.
ICU doctors said some of Emily’s blood vessels were starting to open up. Harrison said it was a glimmer of good news that was quickly snatched away: “We all grew overjoyed, little did we know this would become our next nightmare,” she wrote on CNN iReport.
The pressure on Emily’s brain skyrocketed, she said. Doctors asked to drill a hole in Emily’s skull and insert a tube to relieve pressure and drain excess fluid. The family signed off on an emergency surgery.
“The family waited and cried, we had no idea if we would ever see Emily again, but we knew that even if we did, we will never have our old Emily back,” Harrison wrote on December 14.
It was a tense hour, but Emily pulled through.
What would Emily want?
A day after the emergency surgery, the Bauer family saw the extent of the damage to Emily’s brain.
“We met with Neurology team who showed us Emily’s brain images,” wrote her mother, Tonya Bauer, in a daily journal on Facebook. “They told us that all white areas on images were dead. It looked to us at least 70% of the images were white.”
Without the breathing tube, Emily’s throat would not be able to stay open, as that part of the brain was dead, her family said.
Doctors painted a bleak picture of Emily’s future. She would likely not recognize her family. She would be completely unaware of her surroundings. She would never be able to eat on her own and never regain function of her arms and legs, her family said.
“We were asked to think of what Emily would want. What quality of life would Emily want?” Tonya wrote.
The family decided they would take Emily off life support, just four days before her 17th birthday.
Hurdles to enforcement
One in every nine high school seniors admits to having used fake weed in 2011, according to a national survey by the University of Michigan. Synthetic marijuana is the second-most popular illicit drug they use, behind marijuana.
In July 2012, President Barack Obama signed legislation banning five common chemicals used to make synthetic marijuana and bath salts. And that same month, the DEA seized almost 5 million packets of fake weed in its first national sweep of the drug.
States handle the penalties for drug offenses in lots of different ways and possession has varying definitions, according to NCSL’s Lawrence.
Some states, such as Texas, classify synthetic marijuana as Schedule I drugs, which are unsafe, have no medical use and a high potential for abuse.
“They’re in line with other states. It’s hard to say if there’s a middle, but they’re similar to other states,” Lawrence said.
Each day is a fight
Three days after pulling life support, the Bauer family marked a day they didn’t think they would: Emily’s 17th birthday.
“Even though she couldn’t move, is blind, and could hardly be aware of what was going on around her, she laughed with us as we made jokes and listened to her soft whisper replies,” wrote Harrison.
“It is my little sister shining through, in every way she can manage, with every ounce of strength.”
Each day since has been a fight — a fight to move a finger, a fight to whisper something to her family, a fight for life, according to her big sister.
“She is in so much pain and confusion, but the family is thankful every single day to still have her alive,” she said.
Her stepfather, who has been in Emily’s life since he saw her in the delivery room, hopes he can spare other people his family’s pain.
“I don’t wish this upon anybody at all. When she cries for help and not being able to help her, to have her just lay there. … She gets depressed because she can’t move,” he said.
“She wants daddy to fix it. It’s very hard for me. If we could save one more parent this emotional roller coaster, then what we do and what we sacrifice will all be worth it.”
Emily knows she’s in the hospital and recognizes her family’s voices, but Bryant says she’s often confused. They’re taking things slow, trying to get an idea of her capabilities. It’s too early to tell the effects of the brain damage, but she’s moving her arms and legs a little bit these days.
More than one month after the life-changing night, Emily was transferred to TIRR Memorial Hermann rehab hospital on January 14. The family says they haven’t heard Emily’s prognosis yet, but they remain hopeful as the teenager tackles physical, occupational and speech therapy, as well as living a new life.
Two weeks ago, Emily started eating solid food again. She even asked her sister for Ramen Noodles as they talked on the phone. “Even though they’re such small steps for her, they’re such giant steps of positivity,” Harrison said.
Saving other kids from this
Bryant and his family are starting a nonprofit organization called Synthetic Awareness For Emily. Their goal with SAFE is to educate families, as well as teachers and doctors, about the dangers and warning signs of synthetic marijuana use. Bryant said he has filed the paper work and is waiting to hear from the federal government on reviewing their nonprofit application.
“That’s why we want to let kids and parents know about the warnings signs: migraines and withdrawal,” he said. “We all know the warning signs of alcohol and cocaine, but with this synthetic weed stuff, it’s so new that nobody knows about this stuff. We want to let other parents know about this so they don’t have to go what we’ve been going through.”