At only 8 years old, Jake Steinbrecher was keenly aware of the impact a person’s actions could have on someone else and looked at every day as another chance to do good.
“He was the best kid ever,” his mother, Caroline Steinbrecher, tearfully told InsideEdition.com.
From helping a classmate who had not yet come out of his shell to cooing over a baby he thought was cute, the Colorado boy never held back on compliments, she said.
"He was just very smart about letting people know he cared about them," Steinbrecher said.
Today, that thought drives Steinbrecher as she works to ensure no other child dies from the error she says claimed her son's life. The boy died June 8 after she claims a pharmacist mistakenly gave him 1,000 times the dosage of a drug he was taking. Other children on the same drug have been adversely affected by similar prescription errors, she says.
Jake was taking Clonidine, an antihypertensive and sedative used to treat high blood pressure and ADHD symptoms. After his parents reluctantly agreed, he started taking the drug to treat his sensory processing disorder, which affected Jake when he left their house.
“This kid — he was just so fun, so easy to be around," Steinbrecher said. "But when he left the security of home and two parents who had that kind of devotion to him and got into a... situation with a lot of commotion — it was just ten times louder for him than it is for us."
Jake Steinbrecher was 8 years old when he was given 1,000 times the correct dosage of Clonidine. (Caroline Steinbrecher)
"So we opted for what we thought was the safest thing," she said, adding that it took them a year to finally make the decision.
For three years, Jake took Clonidine without issue. His prescribed dosage at first required he take a quarter of an oval-shaped tablet, but he eventually was required to take a third of the pill. Cutting a pill into thirds to ensure he was taking the correct dose wasn't easy, she said.
“You couldn’t cut a third on an oval-shaped tablet,” Steinbrecher said. “He’d get two doses that were really close to a third, but the third (third) would be crushed."
The pills were regulated, however, so if she threw away the dust from the final dose, they wouldn't have enough pills for the week.
To make sure he was getting an accurate dose, the family decided to have his prescription compounded into a liquid. They went to Good Day Pharmacy in Loveland.
The first bottle of liquid Clonidine that Jake took worked perfectly, but the first dosage from a second bottle of the syrup would end up killing her son, his mother said.
“Jake complained that the medicine tasted bad,” Steinbrecher wrote in a letter sent to the Colorado State Board of Pharmacy. “Within 30 minutes of receiving the medication, Jake complained of feeling dizzy and fell asleep. His father called me very scared and said something was wrong with his medication.”
What came next was a nightmare that still hasn’t ended.
“Jake’s father held him and watched him,” Steinbrecher wrote in the letter. “After a couple of hours he was still not awake… I pinched his feet and hands and there was no response.”
They rushed Jake to the emergency room, where medical staff performed tests before moving him to a pediatric intensive care unit.
“At this time my son was in a catatonic state that soon went into a cycle of violent and frightening hallucinations,” Steinbrecher wrote. “Every 15-20 minutes he would come out [of] his coma like state screaming in fear and unaware of his surrounding[s]. He was seeing gruesome monsters trying to attack him and hurt him. His father and I took one-hour shifts holding him to prevent him from pulling off the leads during these terrifying episodes.”
He was airlifted to Children’s Hospital in Denver, where a CAT scan was ordered and his condition deteriorated.
“Eventually my son lost all ability to speak and would just scream in terror,” she wrote. “A second CAT scan was ordered and there was evidence of brain swelling.”
Though abnormal areas detected on Jake’s brain could indicate he had suffered from a sudden and traumatic brain injury or a degenerative disorder, the resilient little boy slowly started to show signs of improvement.
It was then that an employee with Good Day pharmacy called to explain they had made a mistake, Steinbrecher said.
An analysis of Jake’s prescription also showed a grave error had been made.
Jake’s prescription called for a .03 milligrams per 2 milliliters dosage, but he was instead given 30 milligrams per 2 milliliters, ARUP Laboratories wrote in its analysis of the medicine. On October 31, 2015, Jake had taken 1,000 times his normal dosage.
Jake " lost all ability to speak and would just scream in terror," his mother said. (Caroline Steinbrecher)
“I could not even speak; at that point I realized how close I came to losing my son,” she wrote at the time.
She said Good Day Pharmacy’s owner later called to show her concern and to express how bad the pharmacist felt about the incident.
“It was no comfort to me,” Steinbrecher wrote. “We spent every minute of every day wondering if our son would survive.”
Jake was released from the hospital on November 3, 2015. He experienced symptoms of withdrawal, including vomiting and the shakes, and months later, died suddenly from “an autoimmune response believed to have been triggered by the [pharmacy] error,” his family said in a press release.
After Jake's story began to gain traction, Steinbrecher said she was stunned to find other parents coming to her with their own, very similar horror stories.
She said the parents of a handful of unrelated children in different States told her their children overdosed — albeit in nonfatal incidents — on compounded, liquid versions of Clonidine that had been erroneously filled with too high of a dosage.
In those incidents, one little boy was given a dosage 400 times the amount prescribed, while a baby was given 600 times their prescribed amount, she said.
A third parent, Alia Skiffington, also contacted Steinbrecher to share her little girl’s experience in 2007 with what was determined to be an incorrect dosage of medication.
“My story is pretty similar, except my daughter did survive,” Skiffington told InsideEdition.com.
The New Hampshire mom was getting her daughter, Leora, ready for school when she gave her Clonidine for the first time to treat ADHD.
Leora Skiffington was also 8 years old when she was given a potentially fatal dose of Clonidine. (Debbie Pickering)
Her mother came to pick up Leora, then 8, and bring her to school.
“She called me and said my daughter had been passed out in the back seat. She asked ‘is she not feeling good? Is something going on with her?’ I told her to bring her home and I’ll try to figure it out.”
After repeated, unsuccessful attempts to wake her daughter, Skiffington decided to bring Leora to the hospital.
“I explained to the doctors that she had tried this new prescription... and her heart rate dropped really low,” Skiffington said. “She was really out of it, she was hallucinating. She didn’t know who I was; she didn’t know who anyone was. It was a nightmare.”
During the week Leora was hospitalized, her medication was tested.
Laboratory tests seen by InsideEdition.com showed Leona had taken a 23 milligrams per milliliter dosage, while she was supposed to take 0.025 milligrams per milliliter. The pharmacy that filled the prescription, The Apothecary in Keene, had incorrectly filled the prescription with a dose nearly 1,000 times stronger than what the child was prescribed, the results showed.
“I didn’t know what the outcome would be,” Skiffington said.
Leora was discharged after a week, but began acting erratically when she got home.
“We had to call 911. We had to restrain her,” her mother said, recalling how her little girl went on to attack her neighbor and emergency responders.
“It was not her,” she said.
“Doctors said she was going through a withdrawal and we had to give her Clonidine again,” Skiffington continued. “It was insane. We were there for another week.”
It was a month before Leona returned to school. She is now a healthy 16 year old but Skiffington still looks at her first born with concern.
Leora recovered and is now a healthy 16 year old. (Debbie Pickering)
“What if something could still happen to her?” she asked.
The Skiffingtons were awarded $200,000 in a settlement with The Apothecary, which was also reprimanded by the New Hampshire Board of Pharmacy in a June 2009 ruling. Susan Harris, who filled the prescription, was made to pay a $5,000 fine and take five hours of continuing education classes.
“But she never had her license taken away,” Skiffington said. “To this day, the woman has never apologized for what she did to my daughter.”
Harris is still a practicing pharmacist, according to the New Hampshire Board of Pharmacy. She did not respond to InsideEdition.com’s request for comment.
Skiffington could not believe her eyes when she saw the news that it had happened again.
“I just was in shock that this kind of mistake could happen to somebody else,” she said. “I think the reason I wrote to her was because I had never ever knew anybody dealt with what I had dealt with and to know how much suffering that poor mom has been through—it really touched me and I felt I had needed to reach out to her.”
To feel history repeating itself nearly a decade later was an experience Skiffington could not put into words.
“There’s nothing in place,” she said of a national or even regional medication error rate, or way to keep track of errors made with specific medication. “That’s scary.”
Steinbrecher is angry for a lot of reasons.
She’s angry that she will never get to see her son dance again, she’ll never see his smile and she’ll never see him live the life she envisioned for him.
She’s also angry there’s no system in place to track the sorts of errors made in pharmaceuticals, which she feels would go a long way to prevent the error that killed Jake.
“I’m petrified I’m going to flip on the news one day and I’m going to hear about another child dying from a compounding error and I just can’t have that happen,” she said.
But Steinbrecher is furious that a month after her son’s death, no one but her family has faced consequences of the fatal error.
“At the very least, this pharmacist should have been on a temporary suspension — period. End of sentence. There should have been something,” Steinbrecher said. “Unlike Jake’s family, she hasn’t missed a day of work for this.”
A spokesman for the Department of Regulatory Agencies said in a statement to InsideEdition.com: “The Colorado State Board of Pharmacy initiated a complaint against Good Day Pharmacy and pharmacist Tomi Folkestad based upon a self-report from Good Day Pharmacy in Loveland.
"The Board received a second complaint from the mother of the child. Investigations were undertaken by the Board. The investigations resulted in the cases being referred for discipline, but final public discipline has not yet been issued.
"The Board recently learned that new information may exist that was not previously available to the Board upon its initial investigation and is working to obtain that information for Board consideration. Disciplinary action will become public when finalized by the board."
Tomi Folkestad is still licensed in the state of Colorado, records show. There are no discipline or board actions on file for her credentials. She did not return InsideEdition.com’s request for comment.
Holding a pharmacist responsible for such a mistake can be a complicated matter, as the error can occur for a myriad of reasons, medical officials told InsideEdition.com.
"There has to be a culture, if someone reports an error, they’re not going to be punished for it," Dr. Frank Federico, executive director of Institute for Healthcare Improvement and chair of the National Coordinating Council for Medication Error Reporting and Prevention.
He noted that blame alone will not help if a systemic issue is the root of the error.
“What we learned very well is punishment does not improve the system,” he said. “Because the way the system is designed, the next person might make the same mistake. Then what do you do?
“When you investigate [a] case, you want to know did they have good procedures in place, were they understandable, could someone follow the procedure, did they person act reckless... reckless behavior means you broke the rules.”
And when dealing with a “high alert medication” like Clonidine, pharmacists should exercise extreme caution, he added.
"In this scenario I would say Clonidine — it should be considered a high alert medication,” Federico said. “Because when you do it incorrectly, there are serious risks.”
The consequences of those risks are what Steinbrecher has to live with every day. Thinking back on her son and what made him so special, she begins to cry.
“He was the best kid ever,” Caroline Steinbrecher said of her son, Jake. (Caroline Steinbrecher)
"Jake was resilient to no end. When other kids would get upset about little things, he would just bounce it off and try to have the best day ever," she said.
Like other children, he typically told his mom he did "nothing" at school, but his teachers sang his praises for using his talents in dance to lift up others.
"If there was a little kid having a problem, [teachers] would go get Jake and ask, 'you want to see if you would dance for this kid?' And Jake would have a dance challenge with the kid... He would go to school every day and he would make changes in these kids’ lives."
Above all, he was excited for what was next.
"He knew he was growing out of the medicine," Steinbrecher said through tears. "He was so thrilled he was getting to go to third grade. That’s all he wanted to do, he was beating at my door, 'Mom lets go to school, I want to go to school!' And he loved dancing. He wanted it to be perfect and pretty and that was honestly what he was worried about the night he died—missing that practice so badly."
“It was heartbreaking to lose him at this age," she continued, "because you could so much see the man he was going to be when he grew up. They took away my future, my family, my future grandchildren. That child was everything to me.”