Baylie Grogan, a responsible college student, tragically died after an accident involving a ride share. Her mother, Shawnee Baker, shares her harrowing experience in a new book, "Baylie," to advocate for safer college campuses and changes in healthcare regulations.
Baylie's night ended with a ride from men claiming to be med students, which took an unexpected turn. After being possibly drugged and disoriented, she was struck by a car. The ensuing medical challenges highlighted the difficulties families face due to HIPAA regulations and the lack of immediate access to vital patient information.
Baker recounts the family's struggle to receive crucial medical information and make decisions for Baylie. The difficulties obtaining toxicology reports and the hospital's reluctance to release information due to HIPAA, and legal battles surrounding Baylie's end-of-life care are detailed.
The book's proceeds benefit Baylie's Wish Foundation, which aims to:
Baker also partners with a ride-share safety app. She highlights the lack of transparency surrounding campus accidents and advocates for mandatory data collection and public disclosure.
Baker candidly describes the emotional toll of her loss, mentioning her support system and the healing process. She encourages families to seek professional help and underscores the importance of open communication and support networks.
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Baylie had been at an afternoon pool party with her sorority sisters and then proceeded to clubs in downtown Miami. Eventually, she was ready to go home; her friends weren’t. After some back and forth with friends, she was offered a ride from men purporting to be med students at the university, who told her that they were in the same dorm and convinced her to share a car.
She canceled her ride share and rode in theirs back to campus — or so she thought. But the car began a meandering loop, wherein the guys urged her to drink water, possibly drugged. She nervously complied and began texting her friends in a panic. She then spilled the water; the ride share driver ordered them out of the car; and she fled onto the street, confused and disoriented in the dark, her mother recalls.
Meanwhile, her friends were trying to track her from campus, without a response. She had stumbled into six lanes of traffic. Near their apartment, sirens rang out. They were for Baylie.
Baker and her husband, Scott, frantically devised a way to get on a plane. But even Shawnee, a longtime trauma nurse, was unprepared for the sight of her swollen, intubated daughter fighting for life after being hit by a car a few minutes from campus. Eventually, she was flown to a Boston-area hospital, where she ultimately died after the family wrestled with legal challenges spurred by HIPAA and health care proxy regulations.
This month, Baker shares her daughter’s story in a new book, “Baylie,” with proceeds going to Baylie’s Wish Foundation. Among other initiatives, Baker hopes to create Baylie’s Law, granting next of kin essential medical information and decision-making powers. Proceeds from the first 5,000 copies go to the foundation, which also advocates for better safety on college campuses.
Baker has also partnered with 3rd-i, a tracking app geared toward preventing ride-share assaults, which enables friend-tracking, audio and video live streams, and immediate access to emergency help.
Here’s what she wants other families to know about her daughter — and about staying safe at college.
Tell me about Baylie.
She was incredibly intuitive, responsible, and very mature for her age. She was the mother hen. When this happened, the biggest comment we heard from people was: “This is the last person I ever expected this could happen to. She’s so careful.”
She took eight college credits over the summer and was so driven and motivated. All summer, she didn’t go out at all. Her first weekend back at school, she said, “Mom, I’m so ready to just go out and have fun.” That was the weekend that took her life.
How did you find out about her injuries?
We lost service on the sailboat because we were three hours off the coast of Maine. I didn’t have a signal. On Sunday morning, I had a signal at around 8 a.m., so I sent Baylie a text, and it bounced back. That was weird. And then the phone rang, and it was Miami-Dade police.
They said, “Are you Baylie’s mom? There’s been a terrible accident. Your daughter’s alive, but you need to come to Miami right now.”
They gave us the phone number for the hospital. The hospital couldn’t give us information. Finally, we heard from the trauma surgeon, and he said, “Do you have a HIPAA waiver or health care proxy?” And we said no. He told us that he couldn’t give us any information over the phone; it was a privacy issue.
I asked: “How serious is this? Did she break her leg? Can I talk to her?” He said, “I’m sorry. I wish I could tell you more. Just come to Miami.”
I was completely losing my mind. We finally got to Miami. I had been a nurse for 20 years. I’ve worked in the NICU. I had done trauma nursing and trauma level-one for four years, and I had never seen anyone as bad as my daughter. She was a balloon. Her head was bigger than a basketball. It was absolutely enormous and almost unrecognizable.
We asked the hospital: “Did you do a toxicology?” But the policy in Florida was that, for any trauma patient, they routinely do not run blood alcohol or drugs on them, because insurance companies deny the claims for the entire ICU stay. And we were like, “Are you kidding me? You have to draw blood.”
They said: “I’m sorry. We don’t know that Baylie would want you to know that; it’s a HIPAA violation. You can’t ask us for that. The hospital has guardianship. The ethics committee has taken guardianship of your daughter. If the ethics committee wants it ordered, they can order it, or the police.”
By the time we get this all done, time was of the essence. The drug doesn’t stay in the system very long. Forty-eight hours later, they drew the blood, and there was nothing there.
When we get to Boston, there were 20 people at a big round table: doctors and ethics committee, clergy, social workers, everybody.
They said, “Unfortunately, they misdiagnosed your daughter in Miami. On the day she came in, there was a major brain stem injury, a bleed in her brain stem, that they missed. Because they missed that, her prognosis is significantly worse. She will likely never come out of a coma, never open her eyes again, and will have to be institutionalized. She will be vegetative.”
She went from a 7 percent survival rate to 1 percent in Boston.
How were you getting by?
It was unbelievable. I was pregnant [at the time]. I’m throwing up, I’m not eating, I’m medicated, I’m having contractions, I’m going into early labor. It was absolutely horrific.
Strangely, Baylie and I had a conversation a year earlier. She had said to me: “Mom, there are things worse than dying.” And I said, “What do you mean?” And she goes, “Mom, being trapped in a body that doesn’t work is worse than dying. Promise you’ll never let that happen to me.”
I said, “I promise I’ll never let that happen to you, and don’t let it happen to me. It’s more likely the other way around, right?”
The other strange thing was a book on her nightstand, written by Dr. Adrian Owen. It’s called “Into the Gray Zone,” and it was a book about a 19-year-old girl hit by a car, trapped in a coma.
When we transferred her to Boston, her doctor, who had written the foreword for the book, said, “There’s something else. I’m the only one in this country running a trial study on the search for consciousness, and your daughter meets the clinical trial criteria.”
The book on her nightstand had talked about a trial being done on 17 patients. And he said, “Well, ironically, your daughter will be the first one in the United States to have this clinical study done.”
Talk about chills. She had the clinical study done to see if there was consciousness left to make the decision to let her die. In the meantime, I was reading the book as fast as I could to understand what she knew about consciousness. It talks about how horrific it is for those who survive, and how it’s such a terrible existence. I already knew what she wanted me to do.
We had to fight for the right for her to die. We had to get lawyers involved. They finally agreed that the ethics committee would call 10 family members, and if everybody agreed, then they would let her go. But there couldn’t be one person who wavered — not one. It was unanimous. The medical community agreed. All of her physicians agreed. The nurses all agreed. Everyone agreed about quality of life.
Then it went to the board and the CEO and the lawyers at the hospital, and they called us on a Sunday night and said: “I’m really sorry, but we’ve declined the request to let your daughter die.”
We’re like, “What are you talking about?”
We didn’t have a health care proxy, and the risk of a lawsuit was still there. My husband said, “Make sure you have your PR department ready tomorrow morning, because I will have every news station at your hospital letting them know that you would rather keep Baylie alive in a vegetative state, in a coma.”
An hour later, the CEO phoned back, and he said, “We’re going to let her die.” That’s what we went through because we didn’t have a health care proxy.
What are the lessons for families who might be going through something so horrible? Do you have any practical — or emotional — advice?
I’ll just quickly touch on the foundation. The foundation is not only about the health care proxy and having that as part of college admission forms at every school.
The foundation is about college safety and understanding that there isn’t enough done at colleges to protect these kids. There’s an issue with transparency.
What we understood after this happened was that there was a very high likelihood that it was sex-trafficking for Baylie. We were told that it was common for [offenders] to take them on a 5-mile loop and wait for them to pass out.
Then I ran into a family who’s doing the Corey Safety Act. This was a boy who was killed in Colorado. These boys get drunk, they get put back in their dorm room, go to bed, they don’t wake up the next morning. Nobody knows; it’s considered an accident. Accidents on campuses are not recorded. There’s no data, there’s no stats, and there’s no transparency. A bill should be passed this month that will force colleges and universities not only to keep the data but to make the data public and to share how many deaths occurred on campus.
I found a group called Helping Parents Heal, which is an incredible foundation for families who are going through grief and trauma.
What’s your personal coping mechanism?
I wish there was an answer to that. I saw a psychiatrist right after I gave birth, because I was at high risk of postpartum depression, anxiety, and psychosis, and they thought I was going to kill myself. He did studies with parents of kids in high school shootings, and he said it took two years for the brain to rewire, two years to make sense of this loss, two years before you can expect to smile again.
He said: “Your brain is trying so hard to cut those connections, to detach and to rewire and to rebuild a new life.”
That was actually helpful for me to learn because you think you’re going crazy. You’re in so much pain and you’re so confused.
What is her legacy?
Baylie’s favorite quote was, “Be the change.” I’m doing that for her, and trying to make a change to save other people from going through what we went through.
There are safety apps out there now, which I’m trying to promote. Schools are still using the blue light system from the 1970s. You have to go up to the blue light, press the button, and wait [for emergency help]. We really want them to put that money toward safety apps to give to all kids that will protect them in ride-shares.
And amnesty: The reason the sorority girls didn’t reach out for help is because they were afraid of getting in trouble. We need to have a bigger safety net. We need to have amnesty laws that favor these kids, that understand they’re not 30 years old, so don’t expect them to act like it.
If someone knows enough to ask for help, give them help. Have a ride from the school, where the school says, “Look, we’ll just come get you. No questions asked.”
Interview was edited and condensed.
Kara Baskin can be reached at kara.baskin@globe.com. Follow her @kcbaskin.
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