He’s just getting into Star Wars, but for the moment, Hunter still loves trains.

The 4-year-old boy smiles as he explores the Northwest Railway depot with his mother, Snoqualmie resident Christina Stembler, looking around at the big machines and the other children at play.

Firmly in his grasp is a new toy, a metal Thomas the Tank Engine for his collection.

“He’s the number-one blue engine,” Hunter says.

“Is he awesome?” asks Christina.

“Yeah,” comes the reply. Hunter reveals that Thomas is fast, too, and that he gets in lots of crashes.

But this train is no ordinary toy, and Hunter is no ordinary boy. The little train is a reward for Hunter doing something today that he finds hard, but comes much easier for other little boys.

In a sitting last week, he ate three tablespoons of yogurt—the most food he’s ever swallowed. He gets a treat for that.

“Today, Hunter let me put three spoonfuls of yogurt in his mouth,” Stembler says. “He sat there and let me!”

He likes the taste, but eating itself is a challenge.

“Later on, he’ll realize that eating is a part of life,” Christina said.

Diaphragm defect

Hunter was born in 2008 with an unusual birth defect. Congenital diaphragmatic hernia, or CDH, is about as rare as cystic fibrosis or spina bifida, affecting about one out of every 2,500 babies.

With CDH, a child develops without a diaphragm, the muscles that separate the chest cavity from the belly and allow us to breathe. Hunter’s left diaphragm muscle did not form, so his guts push into his chest cavity, his heart shifted right, and his left lung didn’t fully grow.

CDH usually begins around the eighth week of pregnancy, and moms don’t typically discover the condition, if they discover it at all, until the 20th week. Christina’s doctor did discover the condition, and gave Christina and husband Aaron the choice to decide whether Hunter would be born at all.

It was a hard choice, and a big risk. Babies with CDH have about a 50 percent chance at survival; those that do live often have complications for the rest of their life.

“You get as good as you get,” Christina said.

“We chose to keep him,” she says, choking up, because “he didn’t give up. He’s awesome… He’s been my little miracle man ever since.”

Hunter survived, breathing via an ECMO, or extracorporeal membrane oxygenation machine, which acts as a mechanical heart, lungs and kidney all in one. Then, doctors put a synthetic patch where his left diaphragm should be.

But his life was still far from normal. His chances of getting sick have always been very high, and he’s survived some tough respiratory infections. Hunter doesn’t grow as fast, or weigh as much, as his siblings do.

Already, his younger brother Hayden is rapidly gaining on him.

“My 2-year-old is climbing walls, everything he can,” Christina added. “Hunter’s just learning how to do that. He’s just learning how to jump… Hayden is almost his size, but Hunter holds his own.”

Besides going to the Snoqualmie Elementary School special needs preschool, Hunter spends five days a week with a special therapist, learning how to eat. They sit together and find fun ways to handle food.

Food is very tricky for Hunter. The breathing tubes he needed after he was born, and again when he had a bad respiratory infection, plus the fact that the valve between his esophagus and his stomach isn’t fully formed, made it really hard for him to eat like other little boys. Hunter eats via a syringe into his body. He’s never known the thrills of fruit, chocolate or soda, though he did once get a tiny sip of his dad’s beer.

“There’s a window, when you’re a baby, to learn to suck, swallow, breathe,” Christina said. “Because he had a breathing tube shoved down his mouth so long, he missed that window.”

He’s never wanted to put food in his mouth, so he throws up. When his younger brother was born, Christina had to get used to a son who was hungry for solid food, again.

For all his challenges, Hunter’s a smart kid.

“He’s very emotional, very keen on how he’s making you feel,” Christina said. If he upsets someone, or says something wrong, he’s quick to say sorry or offer a kiss.

When Hunter was born, Christina’s oldest daughter Danielle had a boyfriend, Jake Huber.

“We were explaining about Hunter, and (Jake) said, ‘I think I had that,’” Christina said. He showed them the scar from his own diaphragm surgery.

Learning how a healthy teen like Jake had survived the condition brightened a dark time for the family.

“I realized what Hunter has the capability of becoming—anything!” Christina said. “It was such a huge relief.”

“The hardest time was at the very beginning,” said Stephanie Huber, Jake’s mom. “They tell you he has a (huge) chance of not surviving.”

Jake was in the hospital for months, on oxygen. Stephanie had to learn how to feed him. He endured bad chest colds. But Jake’s situation slowly got better.

“He got stronger and stronger all the time,” said Stephanie. By the time Jake was eight years old, he had moved past it.

“He never really looked back after that,” Stephanie said. Today, at age 20, Jake Huber snowboards and does lots of hard, physical things. The only echo of CDH is the occasional case of severe hiccups.

Thinking of Jake, Christina now takes Hunter to visit other families, who have newborns with CDH and are new to the whole thing.

“They can have the same emotion I felt when I met Jake,” Christina said. “It’s a dark road that they’re on, but they can see that there is a light. Just have some faith.”

Getting the word out

Stembler is helping fuel that faith through an effort spanning the Northwest. She is the Washington representative for CHERUBS, a national nonprofit that helps families of children born with CDH.

Also known as the Association of Congenital Diaphragmatic Hernia Research, Awareness and Support, CHERUBS promotes public knowledge of the defect, along with research into its causes and possible cures. Christina says doctors still have little ideas about what causes CDH.

To get the word out about the group, and to push for congressional support for CDH research, Stembler is holding a walk on Thursday, April 19, on the Seattle waterfront.

“We’re doing these parades to share how important it is to do research,” Stembler said. “I just need people to sign up and join me.” She’s got about 20 people signed up for the event, a short walk and a balloon release; her goal is to have 50 attend.

Christina’s and Hunter’s efforts go to show local families that CDH is a real challenge, but that it can be overcome.

“They should know that I’m there for them,” Christina said.

• You can learn more about CHERUBS and CDH by visiting www.cdhsupport.org, www.babyhomepages.net/stembler, or contacting Christina Stembler at (425) 922-2828 or washington@cherubs-cdh.org. Or, visit her Facebook page, “CDH Awareness – Seattle, Washington Parade of Cherubs,”  https://www.facebook.com/#!/events/202451286525772/