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Later this week, Seth Sturman will travel to Dallas. When he comes back, he'll have a whole new face.

Clarion readers were first introduced to Seth in March of 2007. Seth, the son of Steve and Tesa Sturman, was born with a rare genetic condition called Crouzon's Syndrome. Seth's facial bones grow at a much slower rate than they should, giving his face the appearance of being squished together in the middle.

Crouzon's Syndrome also leads to other serious medical conditions because it can interfere with the way the brain grows. There's also a danger to Seth's breathing -- the nose and throat are part of what's getting squeezed together in Seth's face.

Now 3 1/2 years old, it's time for doctors to give Seth a face he can grow into.

Scary beginning

Seth was born on April 5, 2005, at Central Peninsula Hospital in Soldotna. Steve and Tesa had taken birthing classes, but nothing had prepared them for the whirlwind that followed Seth's delivery. He was having trouble breathing, and doctors were concerned about the shape of his head, that he might have been born with Down Syndrome.

Steve and Seth were taken by helicopter to Anchorage, where a doctor visiting from Seattle diagnosed Crouzon's. Seth would be OK, but surgeons would need to periodically open his skull to allow his brain to grow and to alleviate pressure on his airway.

Seth's first major surgery came at 3 months old, and he's had more than a few since then as different conditions have drawn concern from his doctors.

Difficult decisions

Last year, Steve and Tesa were faced with another difficult decision. Seth was having trouble breathing, particularly when he was sleeping, and doctors told them that if a breathing apparatus didn't help and his condition didn't improve, they would perform a tracheotomy.

That was the last thing Steve and Tesa wanted to have happen. Had doctors done the tracheotomy -- and Steve and Tesa said they felt pressure to do it -- it would have stayed in for several years, and would have delayed the surgery to pull the middle of Seth's face forward.

While the Sturmans were struggling with that decision, a lot of other things were intersecting in their life. They went to Dallas as part of the family business, Fred's Alaska Seafood, and set up shop marketing wild Alaska salmon there.

At the same time, they began looking for different answers to questions they had about Seth's condition, particularly his difficulty breathing. They felt like they had hit a wall with their doctors in Seattle, who were pushing for a tracheotomy, and started searching on the Internet for more information on Crouzon's.

As it turns out, the surgeon who has pioneered the surgery techniques for Crouzon's patients, Dr. Jeffrey Fearon, is located in -- you guessed it -- Dallas. He told Steve and Tesa that rather than give Seth a tracheotomy now, he'd perform the mid-face advancement surgery to pull his face forward at an earlier than usual age.

"He looked at Seth and said, 'Piece of cake,'" Steve said.

He also diagnosed the cause of Seth's apnea and recommended an immediate surgery -- something other than the tracheotomy Steve and Tesa were reluctant to consent to.

Seth had a cranial malformation, Tesa said, and the brain has what she described as tonsils. Those tonsils had slipped through an opening in the bottom of the skull, and it was cutting off his brain's instructions to tell the body to breathe.

"Sure enough, it needed to be fixed ASAP," Tesa said.

Steve and Tesa were sent back to Seattle for the surgery to enlarge the opening and move those tonsils back up where they belong -- but help came from an unexpected place to allow them to do it.

Tesa was participating in a Bible study group in Dallas, and when the other ladies in the class heard the Sturman's story, they decided a fundraiser was in order.

"Those ladies raised $2,500," Tesa said. "... I was shocked at how much money they raised. It was quite a blessing."

The money helped Steve and Seth get to Seattle -- the Sturman's medical coverage only paid for flights originating in Alaska -- and helped with a rental car and hotel room during their stay.

That was in March, and the Sturmans have been anticipating Seth's upcoming surgery since then. Steve and Tesa have learned quite a bit more about Crouzon's over the past year, much of which has been new to them.

"When we met this doctor, he was telling us things we hadn't learned yet. We felt like we were back in class," Tesa said.

One of the things they learned was that Seth's facial bones are in fact growing -- they were under the impression that the bones weren't growing at all -- but at only about a quarter to a third of the rate they should be.

Seth's upcoming procedure will pull those bones forward using something termed the RED system, which stands for rigid external distraction device. A halo-like device will be attached the Seth's skull, with a splint attached to his upper teeth to provide the forward pressure. Over the course of eight to 10 weeks, screws will be turned to pull the middle of the face forward, giving Seth some features he's never had, such as eye sockets. The procedure also will alleviate his breathing problems.

Steve and Tesa said the procedure actually will pull Seth's face farther forward than his lower jaw, giving him an overbite for a while, but also allowing for growing room for the rest of his head.

In the mean time, Seth has continued to develop like any normal toddler. He has a good vocabulary, supplemented by quite a lot of sign language. He loves Curious George, and on the particular day a reporter was visiting, wanted nothing more than to ride in the truck with his dad. Seth now has two baby brothers -- Colby is 1, and Brett joined the family just this summer.

"He's very good, very gentle. He loves to hold his baby brother," Tesa said.

"Cognitively, he's sharp as a tack," Steve said. "Once we get his little face tuned up, he'll be good to go."

Excitement, anxiety

Seth will have to undergo another procedure as a teenager, but Steve and Tesa figure that doing it now will allow him to have a more normal childhood.

"He's going to appear more normal for more of his life," Tesa said. "Traching didn't sound normal to us. To us, this is an opportunity for him to have as normal a childhood as possible."

The surgery doesn't come without some anxiety, though. Steve and Tesa happened across a documentary program on a boy from Africa undergoing the procedure, and recorded on their DVR. They plan to show the video to Seth and his younger brother, Colby, to prepare them for the idea of Seth having a device attached to his head.

However, watching the segment filmed in the operating room, particularly the sound of the drill, makes Steve cringe.

"This is the one we've been waiting for 3 1/2 years," Tesa said. "We're excited, but anxious, nervous, happy, sad - the whole gamut of emotions. We know he'll feel way better. We thought with each surgery, it would get easier, but that's not the case."

"You fall more and more in love with your kid every day, and it's harder and harder to hand him over to the nurse. And there's a different apprehension with this one," said Steve.

The biggest benefit the Sturmans are hoping for is for Seth's breathing to improve. Right now, they keep an ear open all night, listening for any sign of a struggle for breath, and Seth sleeps with supplemental oxygen.

"We're always listening. It will be nice to know you can get some deep sleep, hit your REM," Steve said.

Coming home

Easing that anxiety is the decision Steve and Tesa made to bring Seth home while the RED device does its work.

"We have people here who can give us a break every now and than. We were getting pretty nervous about the big trip, but now, coming back here, it's not quite as daunting," Tesa said.

They hope that coming home will add a little normalcy to an otherwise crazy two months.

"Hopefully, by coming back here, it will go a little faster for him," Tesa said.

The Sturmans have gotten a great deal of support though their church, the First Baptist Church of Port Nikiski. Everyone there knows Seth's story, and they feel comfortable taking him to Sunday school and sitting in the sanctuary there with him. Updates on Seth are posted on the bulletin board by the door.

"Our church family, when they found out we were coming back here, they were excited to be able to see and experience it with us," Tesa said.

The church has also helped the Sturmans prepare for the next couple of months. For example, Seth won't be able to pull a shirt over his head, so church member have been collecting button-ups for him.

The Sturmans also have started making contact with other Crouzon's families around the country, sharing advice, trials and tribulations through e-mail or over the phone, something they've found comforting.

"It's neat to be able to talk to other Crouzon's moms," Tesa said.

Big changes

"I'm looking forward to November," Tesa said. "We're going to take a new family photo for our Christmas cards, with a new Seth-a-roo."

At the same time, the dramatic changes to Seth's face have made Steve and Tesa a little sad, too.

"When we first met another Crouzon's family, they were talking about how much they missed his face. This is the face we've fallen in love with for the past 3 1/2 years. The world sees it as abnormal, but it's a face we've come to love," Tesa said.

"It's so stinkin' cute," said Steve.

"And now it's going to change forever," said Tesa.

Will Morrow can be reached at will.morrow@peninsulaclarion.com.