From 2005: On a day of miracles, Mark Portwood briefly came back

Editor’s Note: This article was originally published on Dec. 25, 2005.

All along, Tina Portwood could see a glimmer in her son’s eyes, even if the doctors couldn’t.

Somewhere inside the shell of her son’s body, Mark, her “baby boy,” was still there. At age 26, Mark was using a wheelchair, his mouth gaping, his green eyes staring blankly, unable to answer questions or feed or dress himself. The doctors all said he was gone, confined by a horrible car accident to what they described as a near-vegetative state. Trapped forever in some dark nowhere place where brain-injured people go.

Despite Tina's pleas — two years of trying to persuade doctors and writing letters to politicians — no one would help. Mark could not be helped, they said.

Tina refused to believe that. She quit her job, learned to care for her son, brought him home from the hospital to a bed in her living room in Lexington. For two years, she and her husband, Eugene, worked with Mark, rejoicing in the smallest improvement, despairing as his muscles deteriorated.

Still, Tina insisted: The Mark she knew was inside that broken body. “He just needs help coming out,” she would say.

And then, on Aug. 9, two days after a medication mix-up sent him into withdrawal and nearly killed him, Mark inexplicably came out of the dark place.

Tina’s baby boy opened his eyes, and they were clear and alive. He told jokes, asked for a cold beer, told his mother that he loved her.

Mark was back.

For Tina, it was a miracle, the answer to two hard years of frustration. It was so overwhelming, so unexpected that she forgot to take video of Mark with the camera someone brought to the hospital that night.

There would be plenty of time for that, she thought. But as she talked (talked!) with her son, Tina didn’t realize that even the brightest miracles can be plunged back into the dark, or that a mother’s love could be pushed to the brink again.

In medical terms, Mark Portwood had suffered a closed head injury when he ran off the road on Old Frankfort Pike in April 2003 and hit a tree. He slammed his head against the interior of his white Dodge pickup with such force that it swelled to the size of a large watermelon.

After the accident, he remained in a coma for months and suffered three strokes. He wasted away to 98 pounds, a fraction of the 160 he once weighed. His spindly body twisted into a boomerang shape, a common muscle condition seen in brain-injured patients.

Doctors surgically placed a pump in his abdomen, and used it to send a muscle-relaxing drug called baclofen into his spinal fluid to calm his twisted body.

Once Mark stabilized, after almost five months in the hospital, Tina brought him home, where he began making small improvements.

He began blinking his eyes — once for yes, twice for no — in response to Tina’s questions. Slowly, he started talking. But he never said much: just the names of his visitors, and short commands or answers. And when he spoke, it was in a low robotic tone with long pauses between each word.

He couldn’t use his limbs and lived with the help of a feeding tube.

“They always told us that Mark wasn’t there,” Tina said, “that he didn't know what was going on.”

Tina and Eugene didn’t know how to react when Mark started screaming violently on Aug. 7.

His breathing slowed and nearly stopped as the Portwoods drove to meet an ambulance at Tates Creek Road and Man o’ War Boulevard. Eugene gave Mark mouth-to-mouth to help him get air.

In the emergency room, doctors discovered that Mark’s baclofen pump had emptied. His heaving body was in withdrawal from suddenly being without the medication. His respiratory system was failing.

Doctors heavily medicated Mark to ease the pain and stabilize him.

He slept for two days.

On Aug. 9, a Tuesday, he woke up around 1 p.m.

As his eyelids fluttered open, there was a strange smile on his face.

Is he really smiling? Tina thought.

With Mark’s condition stabilizing, doctors took him off a ventilator. About two hours later, when Mark seemed to be lying still and comfortable, Tina told him that she and Eugene were going home to rest.

“He looked at me and said, ‘You and Jen are leaving?’” Tina said. She was shocked to hear clear words, to hear a sentence flow normally from his mouth.

Tina studied Mark before slowly telling him again.

“Oh, I misunderstood you,” Mark said, shrugging his shoulders.

Tina's heart nearly thumped through her chest.

“I asked him his name and he said, ‘Mark Joseph Portwood,’” she said.

But Mark thought he was still 23 years old, the age he was when he wrecked.

“I didn’t know what to think, I was just so happy,” Tina said.

Mark began asking questions. He asked why he couldn’t move his arms. Tina carefully explained to him that he had a bad accident. That he had been confined to a bed and lost control of his muscles.

“That’s sad,” Mark responded, looking at his fingers.

But Tina didn’t have time to feel sorry for her son.

She called Mark’s brother, Johnny Portwood, telling Mark as she dialed that his brother would want to see him.

“I called Johnny and told him, ‘Mark is talking, and it’s Mark. ... Get up here.’”

Johnny didn’t really think his brother had made the progress his mom claimed. He was busy and didn’t want to go to the hospital. Johnny had long ago given up hope of chatting with his brother the way he used to. Day to day, he worked to accept the brain-injured Mark, always missing the brotherly friendship the two had shared.

But Tina persuaded Johnny to come to the hospital, where Mark greeted him with a smile and asked about his wife and job. The conversation was overwhelming. Four months later, Johnny still can’t put into words the way he felt hearing Mark's voice.

Another brother, James Portwood, also rushed to the hospital to see Mark.

Although time had passed, it was as if nothing had changed for the brothers. They joked about the weight they had put on. They kidded each other about life and pretty women.

Sitting by Mark’s hospital bed, Tina laughed at her son’s jokes and rubbed his shoulders. The sadness she had felt since Mark’s accident — when the heavy weight of worry settled deep into her stomach and darkened her blue eyes — quietly slipped away.

She leaned forward, kissing his cheek softly before turning to go back into the waiting room so Johnny and James could spend more time with Mark. The hospital only allows two people at a time to visit with patients in ICU.

“Mom,” Mark said just before she left the room.

“Huh?” Tina turned to look at her son.

“I really do love you,” he whispered.

Tina smiled.

“I really do love you, too,” she said.

It was just before midnight.

What Tina didn't know was that Mark was already slipping back into the dark. He seemed sleepy, a bit confused. His sentences stopped making sense. He started groaning and complained of pain. Tina, Eugene and Mark’s brothers thought he was just tired, worn out from a long day of conversation and visitors.

So, about 14 hours after he woke up, they let him go to sleep.

When Mark opened his eyes the next day, the fog had returned.

His smile had vanished. The mischievous sparkle in his eyes had disappeared. He lay in bed, his body limp.

Tina’s boy was gone again.

Medical experts say the sudden change in Mark’s medication had also sent a jolt to his brain, causing a chemical reaction that made him more alert, made him appear back to normal.

Similar “waking-up” incidents have occurred to a few brain-injured patients across the United States after abrupt changes in medication, said Dr. Leland Albright at the University of Pittsburgh. Albright, who has been studying and working with baclofen since 1988, is an expert in treating patients with movement disorders, specifically the involuntary tightness of muscles caused by severe brain injuries.

He said the alertness hasn’t lasted in other patients.

Albright said one of the most widely known incidents was former firefighter and brain-injury victim Donald Herbert of Buffalo, N.Y., who, after being barely aware of his surroundings and almost mute for 10 years, turned into a chatterbox when doctors experimented with a combination of drugs.

But, as with Mark, his alertness lasted for only 14 hours. He has since fallen back into his vegetative-like state, according to Associated Press reports.

Losing Mark for the second time brings Tina Portwood to tears. She regrets not using the camcorder that family members brought to the hospital.

She wishes she had had more time: to tell Mark just once more that she loves him, to tell him how she has missed him, to tell him that she had never given up on him.

Still, the sheer joy of those 14 hours has left her more determined than ever to get help for her son.

Tina and Eugene have sold their north Lexington home and moved in with their son Johnny. They hope to use the money to get Mark more help. They have contacted brain-injury specialists in Philadelphia and Ohio.

Dr. Susan McDowell at UK is experimenting with Mark’s medicine in hopes of bringing him back for good. She has gradually lowered Mark’s daily dosage of baclofen. Because Mark became more alert after the medication left his system, Tina and Eugene were concerned that the drug was hindering Mark’s progress.

But several experts, including Albright, say that’s not the case. “His state of alertness doesn’t have anything to do with his baclofen level,” Albright said. “It’s unlikely that he will wake up again.”

Mark’s daily dosage of baclofen is now about half of what he was getting before Aug. 7. But McDowell had to briefly stop lowering Mark’s dose because he was experiencing withdrawal symptoms, mainly pain.

McDowell also is experimenting with central nervous system modifying drugs to help Mark. She would not say exactly what medications she is using or how. McDowell declined interviews for this story.

In a written statement, McDowell said that Mark’s episode of alertness “clearly demonstrated the need to remain committed to the re-evaluation of Mark's medical treatment. ... We all want a good outcome for him and his family and remain dedicated to that goal.”

Since his baclofen dosage has been lowered, Mark looks healthier, has started eating some solid foods and speaks more quickly. He has also taken steps with the help of others and is able to hold up his head and lift himself in his wheelchair when his body starts sliding down.

He shows more emotion. He smiles, gets frustrated, angry. Sometimes he curses, which upsets Eugene.

“I told Eugene it doesn’t bother me,” Tina said, “For what he’s been through, he has a right to cuss.”

Still, Tina, Eugene and doctors had hoped to bring Mark back by now. It's been four months, and his mental state has changed little. He’s not the Mark that Tina knew before the accident, not the Mark that came back to her on Aug. 9.

Physical therapists — who started visiting Mark regularly after he woke up in the hospital — have already stopped coming, despite Tina’s pleas. He just isn't making enough progress.

“It’s the same thing all over again,” Tina said. “No one wants to help him; no one believes he’s in there.”

Mark still gets speech therapy and occupational therapy a couple of times a week. Tina says he needs daily therapy.

But experts say there’s little chance that Tina will re-create that moment in the hospital.

Still, Sandy Arrick, a nurse at St. Louis Children’s Hospital who works with children and young people with brain injuries, urged Tina and doctors not to give up on Mark. While she hasn’t seen a case like Mark's before, Arrick said she has seen other dramatic improvements from patients whose doctors and families never stopped believing in and working with them.

Tina says she won’t give up.

“I’ll go wherever I need to go,” she said. “There’s got to be someone that can help him. There’s got to be a way to wake him up like that again.”

This story was originally published November 1, 2016 at 5:59 PM with the headline "From 2005: On a day of miracles, Mark Portwood briefly came back."