If you have a child over 18, have they appointed a health care proxy? Should it be you?

Shawnee Baker hopes you consider this: In 2018, her 19-year-old daughter Baylie Grogan was a conscientious pre-med student at the University of Miami, out for a night with sorority sisters when she decided to go home early.

Baylie met two young men who said they were also pre-med, also headed back to campus. They convinced her to share their Uber, which they then drove around in loops while the young men told Baylie to drink water. The Uber driver kicked them all out.

Baylie called friends, saying she was scared, disoriented and couldn’t figure out how to call an Uber. They were tracking her on their phones when she walked into highway traffic and was hit.

Her parents back home in New Hampshire were on a sailing trip off Maine.

It took hours to get to her, and though her parents, Shawnee and Scott Baker, were told that Baylie was in critical condition, they were refused any information with specifics of her injuries, including what kind of surgery she’d undergone. Without a legal medical proxy, her parents were told that Baylie’s guardianship was in the hands of the hospital’s medical ethics committee.

The couple later had to fight hospital officials who wanted to institutionalize Grogan in a vegetative state instead of allowing her to die, something Baker knew had been her daughter’s choice. Grogan remained in a vegetative state for six weeks until she died.

Her parents launched Bailey’s Wish Foundation, and mom has written a book, “Baylie: A Life Shattered. A Promise Kept. A Secret Revealed,” to share with others what they learned the hardest way.

6 questions with Shawnee Baker

You first realized in a phone call from police that even though you were Bailey’s mother, you couldn’t get information about her condition. What happened in those moments?

“[They told me] Bailey was alive but that’s all he could tell me.

“Eventually we spoke to the trauma surgeon who also wasn’t able to tell us anything, although he did say she had been in surgery all night. My husband said, ‘how urgent is this?’ And he said, ‘you may be coming to say goodbye to your daughter. You need to get here now.'”

When you finally get to the hospital in Miami, you asked for a toxicology to test for drugs or alcohol. What happened?

“Apparently at three in the morning, Bailey was all alone in downtown Miami in the pouring rain, and she’s walking.

“So that, that right away alerted us that something else had been going on, and the police then told us they suspected foul play, that they had watched the video of her crossing the street. And they believed that Bailey had been drugged.

“The incident of “roofies” in Miami, date rape drugs, is the highest anywhere in the U.S., and they are very familiar with how they look on camera when they’re walking, as opposed to being intoxicated. She didn’t stumble and she didn’t trip.

“We were told that it’s a policy in Florida to not run a toxicology on a trauma patient because insurance companies deny the claim.”

“And again, we were asked about health care proxy or HIPAA laws and respecting Bailey’s privacy.

“The ethics committee had taken over guardianship. So, if we wanted guardianship of our adult daughter, we would have to go to court for it, which at that point they felt was backed up.

It would take a couple of months to get guardianship.”

What was it like to see Bailey as you fight these issues? 

“I mean, it’s just, it’s just unbearable, unbearable. I, of course, I was sick. I was overcome with grief.  I was collapsing in the room. The surgeon came in and explained just how significant her injuries were in her brain, and she was in a coma.”

Bailey was transported to Boston. Doctors and ethicists gather to tell you that she will probably never come out of that coma. But you had no say about her future until your husband firmly said to the hospital that if they didn’t let her die peacefully, he would call the press to cover the story. 

“That’s right. The decision was made for us that she would be transferred to an institution and left in a vegetative state, but I had promised Bailey years before that I would never let that happen.

“She said, ‘Mom, promise me there are things worse than dying.  Promise me you’ll never let me be trapped in a body that doesn’t work.’

“I said, ‘Bailey, I promise you, I said, promise me it’s more likely to be me than you.’ But I just didn’t think about a health care proxy.

“They were wonderful in Boston and they agreed with us, but the law was the law. So I don’t blame the hospital. They were following the law.

“So, although they did agree to bend the law for us because my husband was so persistent, my heart broke to think of how many families wouldn’t be able to navigate the system the way we did.”

So now your campaign through Bailey’s Wish Foundation and your new book is to make sure young adults have a health care proxy, that parents ask their kids what their wishes might be, and that they have things like tracking apps. 

“Yes, so it’s more than a tracking app.  It’s the ability to call 911 discreetly, to call parents, to call friends with a 911 amber alert on your phone. The location is tracking them, but they can silently call for help.

“The amnesty law right now protects students who are underage drinking, or from criminal charges, should there be a medical emergency.

“But in Bailey’s case, they knew that Bailey was confused. She called for help. She asked the girls to come get her.  She told them that she didn’t know how to use her phone. ‘Help me, come get me,’ she said.

“But without amnesty, they were all afraid of Bailey getting in trouble.”

Colleges have blue light systems. What should they be doing now to help students?

“They spend $90,000 a year to maintain those blue light systems that no one uses, and I really wish they’d use that money towards the safety apps or even a safe ride for kids so that they could call the school and they would come pick them up at any time, any place — never mind the Uber just come get them.”

This interview was edited for clarity.

Karyn Miller-Medzon and Robin Young produced and edited this interview for broadcast with Todd Mundt. Young also adapted it for the web.