Christina and David Dehen cuddle with their only child as they stroke his thick, dark hair.
Gabe is surrounded by love. And a couple of treasured stuffed animals.
But he’s also surrounded by medical equipment.
A bag on an IV pole drips nutrition through a tube and into Gabe’s belly. A monitor tracks his heart rate and oxygen saturation levels. An oxygen machine hums as it breathes life into Gabe’s tiny lungs.
No one knows how long that life will be. It could be days, weeks, months or even years. The family knows tomorrow is never promised.
Gabe is suffering from a rare and fatal X chromosome mutation in his PIGA gene.
There are only 24 known cases of Gabe’s condition in the world, according to his mom, Christina.
Because of a kidney transplant, David was believed to be sterile. But the couple so much wanted a child that they spent thousands of dollars on fertility treatments.
“We put a lot of money and a lot of effort into it with no guarantees,” David said.
But they believe God smiled upon them. Christina became pregnant.
“Everything about the pregnancy seemed normal,” David said. “There were no concerns.”
When Gabe entered the world on Oct. 16, 2014, their dreams began to shatter.
“The minute he came out he had breathing issues,” David said. “Christina didn’t even get to look at him. I got one picture, maybe two, then he was gone (whisked off by medical personnel). They came and told us he was having seizure activity. And he was jaundiced. But everyone was saying they thought he was going to be normal.”
Gabe was immediately taken to Spectrum Health Helen DeVos Children’s Hospital’s NICU.
Several months later, issues still lingered. Gabe wouldn’t stop crying. Ever.
Christina and David took him back to Helen DeVos Children’s Hospital and met with pediatric neurologist Dr. Seth DeVries. Gabe underwent genetic testing in spring 2015.
The results still shake their souls.
The X factor
“They told me that Gabe has a very rare genetic X chromosome disorder, that he was missing part of his X chromosome and that his condition was fatal,” Christina said, her voice quivering with emotion. “It was devastating.”
But suddenly, some other young deaths in her family started to make sense.
“My mom’s mom had two boys that passed away from respiratory and seizure issues — one at age 3, one at age 6,” Christina said. “My mom’s firstborn son passed away at age 4 with seizures. My youngest sister had a boy that passed away at age 9. We knew something was going on in the family.”
DeVries patiently monitored Gabe for several days so that he could record a seizure and know best how to treat it.
Gabe suffers from gastrointestinal problems and reflux, which can cause fussiness. He has breathing issues. He can’t hold his head up, sit up, walk or talk.
He stares, into an uncertain future.
“Right now, the No. 1 goal is to keep him comfortable,” David said. “We’re not giving up on a miracle. You can’t. You’ve got to fight for every day that you’ve got.”
Fight for it. And pray and love your way through it.
Though the days are numbered, the love in these parents’ hearts knows no bounds.
‘His life has meaning’
“God’s holding him,” David said. “I know that he has a purpose. I know that his life has meaning. I look at things so different now because of this. I look at the beauty of people and things you take so much for granted.”
David and Christina dream of tossing a ball to their son. And having him throw it back.
But their interaction is limited to an occasional smile, and intermittent cooing.
“We just treasure those moments,” David said. “It’s hard because the news isn’t good — ‘Your son has a terminal illness. He’s going to die.’ I found myself mourning his death. He’ll never be normal unless there’s divine intervention.”
Gabe’s brain and brain stem are degenerating.
“It’s not going to get better,” Christina said. “It’s only going to get worse.”
Gabe is particularly susceptible to respiratory problems. Doctors have been upfront with the Dehens. A respiratory issue could one day take Gabe from their lives forever.
The little fighter has already survived seven or eight bouts with pneumonia. He’s been admitted to the hospital 19 times for serious health issues.
Christina’s mom, Cheryl, moved here from Virginia to help take care of her grandson.
“She uprooted her life to come here,” Christina said. “She has been very much a caregiver for Gabe when I’m working. She has a lot of love for Gabe, having been through this so many times with her two brothers and her son and grandson.”
Gabe is under the watchful eye of the Helen DeVos Children’s Hospital palliative care team. Team members attend appointments with the family, asking questions on their behalf and helping to make difficult decisions.
Palliative care director Dr. Bradd Hemker, a pediatric hematologist/oncologist with Helen DeVos Children’s Hospital, said Gabe’s future is impossible to predict.
“He continues to face medical challenges related to his underlying disorder and is starting to need more aggressive interventions,” Hemker said. “The uncertain future of Gabe and other children with similar medical complexities is extremely difficult on families.”
In the case of terminal conditions, sometimes doing less is better, according to Hemker.
“Many aggressive interventions can be offered which may provide benefit but which unfortunately will not cure their disease,” the doctor said. “Sometimes doing more is the right answer, but sometimes doing less may actually be the better decision. Our team’s role is to help families weigh these various interventions and determine how to give their child the best quality of life possible.”
Palliative care medical social worker Scott Hawkins recently attended a neurology appointment with Christina, Gabe and Gabe’s home nurse. As they waited for DeVries to enter the exam room, Christina told Hawkins that Gabe had been fussy all day, and that she suspects the ongoing gastrointestinal issues to be the reason.
Hawkins said there are “so many moving parts” in Gabe’s health journey. There’s physical therapy, occupational therapy, neurology and GI appointments. And more.
“We want to offer a lot of different things to you to see if they’re helpful, all in an effort to do the best we can for him and for you,” Hawkins told Christina.
DeVries greeted everyone when he entered the room, then checked Gabe’s pupils, breathing and heart beat.
“You’re getting so big,” DeVries told his patient. “Two years old already.”
DeVries told Christina that sometimes it’s important for them just to talk about Gabe and what’s going on in his world.
“Every child has their own story and every story is different,” the doctor said.
No matter how you look at this story, it’s a sad one.
“I don’t know if words can describe it,” Christina said through tears. “I take it one day at a time. We know our God performs miracles. We wait on that. That’s all that we have left is to put our faith in Him.”
After the appointment, Christina and the home nurse packed Gabe up in his medical stroller, took him down the elevator, through the parking ramp to their car and headed home.
It’s a special home, one they built on property that David’s family has owned since 1965. Last fall, David and his father planted a red maple outside Gabriel’s bedroom window. Gabe’s Tree.
“I wanted to plant a tree now instead of a memorial tree,” David said. “That way, I’m watching that tree grow as I’m watching him.”
When David went hunting last fall in his deer blind up north, one of his favorite places in the world, he dreamed of sharing the great outdoors with his son. Barring a miracle, Gabe will never go hunting with his father.
“I thought, ‘You know what, I’m going to take some dirt from the deer blind and put it on this tree,'” David said. “It just came to me.
“I want his life to touch the world and I want the world to touch his life,” he continued. “I’ve had people bring dirt and stones from all over — Fiji, Paris, the Netherlands, Jamaica, stone fragments from the Berlin Wall, Hong Kong, Mexico, Israel, Greece, stone chips from the Great Wall of China. … It just keeps coming and coming. We’re pushing 100 places already.”
In his deepest dreams, David wants his son to travel to all those places some day, and tell the story of how God healed him.
He wants him to thrive, and live to grow old, and delight in his grandchildren.
He wants that to be the story. Gabe’s story.
This article first appeared on spectrumhealthbeat.org.