Musical nursery rhymes and Disney tunes softly play as 3-year-old Ethan DeHoek cuddles with his mom in the den of their Grand Rapids, Michigan, home.
Outside, a squirrel bounds through freshly-fallen snow in a backyard where Ethan will never play.
As mom and Ethan cuddle, snowflakes gather upon a basketball hoop next to the driveway where Ethan will never dribble.
The mound of snow pushed to the side of their driveway that’s the perfect incline for sledding? Ethan will never slide down it.
Ethan is dying.
No one knows when the hour will arrive. It could be weeks, months, longer even, if fate smiles upon this beautiful little blue-eyed boy who so easily smiles back.
“It’s a small world after all,” mom Lindsey DeHoek sings along to the CD as she rocks the little boy in her arms.
Ethan can’t see her. He’s blind. To him, mom is shape, a shadow at best, but for certain, a familiar warm and enveloping hug.
It’s a time of laughter, a time of tears…
Ethan was born prematurely at 28 weeks with severe complications.
“Anything bad that could happen, happened,” Lindsey said.
Little Ethan’s stomach perforated, he has no bowels. He has brain damage.
Sometimes I bawl my eyes out. …He has a lot of issues, but he’s very loved.
The world that we all might wish for him is so different from what he is living.
He is fed through a central line in his chest. He breathes through a tracheotomy in his throat. His stomach contents empty into a small bag at his side.
His liver is weak, his skin jaundiced, the whites of his eyes miniature pallets with shades of yellow.
Lindsey tickles Ethan. She recites silly lines that make him laugh.
Despite a prognosis that turns any nursery rhyme into tears, Ethan DeHoek smiles. He clutches his mom’s right hand. His mom clutches back, knowing this is a moment to treasure, to file away for a day when Ethan is no longer among us.
They all are.
“He’s in liver failure,” Lindsey said. “He’s terminal. The only way he could survive is by a multi-organ transplant—large intestine, small intestine, liver and pancreas.”
Last summer, after seeking several medical opinions—and learning the outcome may not be what they would wish for—Lindsey and her husband, Brian, made a decision to not put their little angel through any more rigorous medical procedures, in essence, a decision to let him go.
“At first we thought, we’re going to do (a transplant),” Lindsey recalled. “Then we really thought about it and watched his progress and thought, how fair was that to Ethan? Even though we want him here, that’s how I always look at it—what’s in his best interest?”
Lindsey cries about that decision most every day. But as a mother, would it hurt her heart more to let him go, or hurt her heart more to watch him suffer?
There is no good answer.
“We decided not to put him through that because his quality of life wouldn’t be any better,” Lindsey said. “We’re firm believers in quality of life. My faith is what gets me through each day because I know he is not going to get better.”
A realistic outlook, with palliative care
Dr. Hemker and his team assisted 123 families in the past year, families going through difficult times like the DeHoeks. He visits family homes. Attends doctor appointments with the young patients and their families. Offers advice. And a shoulder to cry on.
“We have to think outside the box and make these patients’ lives as good as possible, knowing their lives are going to be shortened,” Dr. Hemker said. “As challenging as it is to have these conversations, they need to be had.”
Dr. Hemker visits Lindsey and Brian in the family den on this snowy, winter day. Dressed in a brown suit coat and copper-color tie, Dr. Hemker sits on the floor next to Ethan and his mom.
“You look awful cute,” Dr. Hemker tells Ethan.
Lindsey fills Dr. Hemker in on Ethan’s recent fussiness. They determine he may be in pain.
“Let’s make sure there’s nothing going on, but let’s treat it like pain,” Dr. Hemker says. “Our goal here, obviously, is that he’s as comfortable as possible.”
Dr. Hemker hits the reality head on. We don’t know how long Ethan will be among us. His liver could take him. He could get an infection.
“The bilirubin number (a liver function indicator) is the No. 1 issue,” Dr. Hemker tells Lindsey. “The other part of this is he could have other complications—a line infection, he’s certainly at risk for pneumonia, he could aspirate. The big picture issue is, will one of those things happen or will a liver issue happen first? Unfortunately, that’s the uncertainty you guys are living in.”
Lindsey praises Dr. Hemker for explaining the reality. So many others want to gloss over the expected outcome, and try to wish him out of this.
“I give you a ton of credit for the way you’re handling this,” Dr. Hemker tells Lindsey. “We’re hopeful right there with you that the end will be a long time from now. You’re preparing for it as much as you can but focusing on what you can do to make his life as comfortable as possible, and that may mean making his life as normal as possible, just being a family.”
A delivery person at the door interrupts the moment. He drops mounds of medicine inside the door—Ethan’s liquid nutrition, enough for a week, according to Lindsey.
Dr. Hemker asks if he can hold Ethan.
“I could hang out like this for a while, buddy,” he tells his little patient, who is 3 in age but more like 18 months in size.
Many questions, few answers
Lindsey poses the ultimate question, one she wants to ask her spiritual counselor at church.
“Why do things happen like this?” she asks through tears. “He’s just the sweetest thing in the world. I know I will probably never know until I go to heaven.”
We have to think outside the box and make these patients’ lives as good as possible, knowing their lives are going to be shortened. As challenging as it is to have these conversations, they need to be had.
Dr. Hemker doesn’t have the answer. He tells her medicine doesn’t have the answer, either.
“I always tell families that I think someday it will be clear, after this is done and maybe years from now, after you’ve been able to share with other families,” Dr. Hemker says. “I work with families like yours that are inspiring to all of us. I think we can learn a lot from our patients and families more than the other way around.”
Ethan’s labored breathing interrupts the moment. Lindsey grabs a suction machine and puts a small tube into Ethan’s trach.
As she suctions, she tells Dr. Hemker how when some people hear Ethan is in palliative care, they automatically think hospice.
Dr. Hemker clarifies that hospice is for patients with an expected six months or less to live. Palliative care is about managing pain, and making patients comfortable, for months or years.
“Skinnamarinky dinky dink, skinnamarinky do, I love you,” is playing in the background. Ethan tilts his head back and smiles.
If only the situation were this silly and light-hearted.
“How can we help with the situation the best we can, knowing we can’t fix everything?” Dr. Hemker asks Lindsey. “We have to do everything we can to make him as comfortable as possible.”
As Ethan’s breathing again becomes gurgly, Lindsey suctions again.
The song continues: “I love you in the morning and in the afternoon, I love you in the evening, underneath the moon.”
Lindsey squeezes then grasps Ethan’s right hand.
“It’s not about the death and dying part,” Dr. Hemker continues. “It’s about living with a serious illness. He looks happier than when I saw him in clinic. This is why I like home visits.”
The other side of the mountain
It’s not the first time Dr. Hemker has been to the house to check on Ethan. Dr. Hemker and the pediatric palliative care staff also attend doctor appointments with Ethan and his family.
“Who comes to your house to talk for two hours?” Lindsey asks. “We were just blown away by him. Dr. Hemker has made us feel so good about our decision. He talked us through everything. If we didn’t have him I think I’d be very depressed. He’s a blessing.”
Ethan’s eyelids start drooping. He’s looking tired.
“The Other Side of the Mountain” serenades from the speakers.
It’s a place Ethan will travel someday, with love and heart strings reaching back to this side, and precious times with his family, times like right now.
The moments are fleeting for sure. Lindsey knows this. Brian knows this. Perhaps even little Ethan knows this as he looks upward and smiles in the direction of his mom.
Lindsey scoops up her beloved boy and cuddles him on the couch. A stream of light from the window illuminates the love.
“Sometimes I bawl my eyes out,” Lindsey says. “We know he is going to pass. We know we’ve done everything possible for him. He has a lot of issues, but he’s very loved.”
As “It’s a Small World” reprises, Lindsey, too, looks upward, toward the light.
“He’s our world,” she says.