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A child on life support: Let him linger or let him go

Published May 29, 2012 10:42 am

Parents must trust their hearts when making their choice.
This is an archived article that was published on sltrib.com in 2012, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

Gerri Osman slipped into her son's bed, cradling him into her arms.

It was something she hadn't done for a long while.

Sixteen-year-old Sebastian didn't respond — not even with the embarrassed "Oh, Mom" his mother wanted to hear.

Sebastian was a rambunctious teen, more often on his longboard than not. Now, he lay between life and death. He was breathing, but not on his own.

His face was untouched, making it look like he was just sleeping. But the bandages wrapped around his skull and the beeping monitors reminded her that wasn't the case.

Osman knew she never again would hold her only child.

"It was so hard to get up, to walk away without my son," said the single mother. "It was surreal."

Even more surreal was that she alone had to make the decision to let her son go. Osman found herself in the impossible situation scores of families face each year: choosing between removing a loved one from life support after a sudden accident, or letting them linger as they hope for a miracle recovery that doctors say likely will never happen.

Parents fall on both sides, some visiting their unresponsive children in a care facility for years while others decide that quality of life isn't what their children would want. Doctors can tell a family what the expected outcome is, but there is no medical certainty about how fully a child will recover from a brain injury.

"There's no right answer and no wrong answer," said Toni Sherwood, a pediatric nurse practitioner who works for Rainbow Kids Pediatric Palliative Care. "It's what's in your heart."

The first call • Gerri Osman was working at Ruth's Diner when she received a call from her son's principal at East High School on Feb. 17, 2006.

She thought her son had gotten into some minor mischief.

"He was a good kid, but he was a teenage boy," she said. "If he could get away with it, he would try."

But the tone of the principal's voice told her something terrible had happened.

The principal didn't have much to share, only that she was getting second-hand information. But she knew one thing: Osman needed to get to Primary Children's Medical Center as fast as possible.

When Osman arrived, she learned her son had been struck by a minivan traveling 40 mph along 1300 East near 700 South as he walked across the street, returning to school after an off-campus lunch.

He was launched on top of the van. His pelvis was broken in three places. Worse, his head had gone through the vehicle's windshield.

"The doctors were amazed he survived the initial impact," she said.

Osman couldn't see her son yet. Medical staff also couldn't give her any information. They simply didn't know the extent of his injuries.

So, Osman sat alone in a small, windowless room for hours as doctors tried to keep her son alive. She called a friend to talk about the accident. Mothers of Sebastian's schoolmates started arriving to lend their support.

She eventually made her way to the emergency room where doctors were working on her son.

All she could see were his feet.

Then, they wheeled out his gurney to take him to the Pediatric Intensive Care Unit.

"I saw him briefly. I was afraid to look at him. I didn't want that to be my last image of my son," she said. "But he didn't have a mark on the front of his face."

Doctors already had drilled a nickel-sized hole into his skull to relieve the pressure of his brain swelling and used drugs to induce a deep coma.

"He had really long hair, and now he had this big bald patch," she said. "I remember thinking he was going to freak out when he saw that."

Medical staff situated him among all the monitors and tubes in his room in the Pediatric Intensive Care Unit.

They told Osman that all she could do was wait.

Navigating the unknown • Brains are tricky.

Scientists have far from a full understanding of how they function, and even less ability to predict how they might heal. While there are some baseline guides, every traumatic brain injury is different.

"We don't have a good objective measure of how much injury a brain has undergone or what recovery will be like," said Kimberly Bennett, medical director of the Pediatric Intensive Care Unit at Primary Children's Medical Center.

Brain scans can be helpful in some cases, but usually don't tell doctors much.

After a brain injury, doctors often will wait a few days to see if the patient makes progress. They look for more responses and less brain swelling.

"It puts the parents in that three-day window in limbo, waiting and hoping," Bennett said.

After those three to five days, a new conversation starts.

"My job is to prepare you for the worst and your job is to hope for the best and be a loving parent," Bennett said.

Doctors lay out three possibilities. The two most extreme scenarios — the child could recover with very little injury or could be brain dead, meaning they are in fact legally dead — are most common.

But the third scenario, in which brain damage is extensive, requires families to make more decisions.

It could mean that the child lives, but has very little to no quality of life. The future: a feeding tube, a breathing machine and a hospital bed.

Other children could live without the equipment, but still be unable to talk or respond in any meaningful way.

"Parents get put in an impossible situation," Bennett said. "What everyone wants to happen isn't possible. It's what is the next best thing that can come out of it."

Best choice • Osman wanted her son to be able to leap out of bed, hop on his longboard and roll right out of the hospital.

She would have been happy if he just could have communicated.

But as the days wore on, she feared neither of those things would happen. She knew she had a choice: Should she let him linger, never again to hike the mountains he loved, or let him go.

After a long night at the hospital, during which Sebastian's intracranial pressure spiked and his condition plummeted, an earlier conversation came back to her.

She remembered the talk they had about life support when she caught him longboarding with friends without a helmet. It was one of those conversations a worried mom has with her teen. Partly as a scare tactic, she asked him what he would want her to do if he had a horrible accident and was on a ventilator.

He looked up with one of those "Are you kidding me?" looks he was known for and said "Pull the plug, Mom."

"There was a sick kind of comfort in knowing we had talked about it," she said. "And I knew that was no life for him, in a hospital bed hooked up to machines."

When she walked back into his hospital room the next morning, she could see a change had come over her son. She can only describe it by saying he wasn't there anymore.

That's when she crawled into his bed and said her goodbyes.

"I just remember it being a really peaceful moment," she said. "He had made his choice, and I had gotten to have a son who as a teenager still said 'I love you' to me in public and would kiss me goodbye in front of his friends."

She had made the decision demanded by an unimaginable situation.

Now she had to share it with family and friends.

New normal • It's hard for people who haven't faced the question to understand how parents can decide to remove a child from life support.

Several of Sebastian's friends angrily argued with his mother to change her mind. They saw what looked like their buddy sleeping in a hospital bed.

But Osman was privy to the medical information and knew she had made the best choice.

It's a difficult situation for any family.

"We've had some people tell us people they knew who don't have all the information told other people they killed their child because they didn't fight for them," said Orley Bills III, a social worker for Rainbow Kids. "Some families fight for the comfort of their child while others fight for them to live. But the bridge over it is love."

It's a matter of reframing perspectives, said Rainbow Kids' Sherwood, the nurse practitioner.

"Is it a fight to live or a fight for comfort and a good death?" she said. "It's recognizing that this thing has happened and now you're facing a new normal."

Bills says the ambiguity is simply part of the process. But the 600 families Rainbow Kids has helped since it formed in 2007 made the decision that made sense to them.

"They get to a point where it feels right in their hearts," Sherwood said. "It doesn't feel good, but it feels right."

Primary Children's Bennett agrees.

"We tell families it's the most loving decision they can make," she said. "It's not giving up. It's accepting what's irreversible."

The final call • Osman realizes that the doctors in the room probably felt she had finally snapped.

She called them together on a Thursday, and after hearing their prognosis, made the call.

"Saturday at 5 p.m.," she told them.

There was no reason to wait, and she couldn't explain it at the time, but the voice in the back of her mind said that was when it needed to happen.

"I've always gone with my gut, with that instinct, and that's what it told me," she said.

She decided to donate Sebastian's liver and kidneys, even though she grew up in a family that didn't believe in organ donation. But Sebastian had told his mother when he was in his driver's education class that he wanted to be an organ donor.

While Osman knew removing her son from life support was the right choice, she was still scared about what it would look like.

It's a common fear, as such children can linger for a long time, Bennett said.

In rare situations, children will have enough brain function to breathe on their own once they are removed from a ventilator. Then, doctors must withhold nutrition — sometimes for days — to prompt death.

Those who do die within minutes may utter a reflexive gasp that can be disturbing to family members, Bennett said.

But Sebastian went "so peacefully and quietly," Osman said.

And her decision to wait was the right one: Had she timed it differently, Sebastian's organs might not have been viable for donation.

Losing her son was a life-changing experience for Osman. She now works for Intermountain Donor Services, sharing the story of her Sebastian's death and organ donation. She encourages families to talk about end-of-life situations because knowing what her son wanted made an unthinkable choice a bit easier.

"You think you'd never be able to live through something like that," she said. "But you find inner strength in some dark corner, just hanging out for when you need it."

smcfarland@sltrib.comTwitter:@sheena5427