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Growing pains

‘Normal’ is a relative term for family facing son’s genetic disorder

Posted: Sunday, March 25, 2007

 

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  Tesa Sturman watches from behind a two-way mirror at right as Annette O'Connell, a speech language pathologist at Kenai Kid's Therapy, works with Seth during one of his three weekly therapy sessions. He receives physical and occupational therapy in addition to the communication support. Photo by M. Scott Moon

Tesa Sturman uses a three-dimensional digital CT scan made when Seth was 4 weeks old to show holes in Seth's skull. He had his first surgery when he was 3 months old. "It was pretty intense for a while," Tesa said, while explaining how Seth lost one and a half times his total volume of blood during the operation.

Seth Sturman, now approach ing his second birthday, has grown into a pretty normal 2-year-old boy. He recently went sledding for the first time, and like most toddlers, took a while before deciding if the activity was exciting or scary.

“He was trying to feel it out — ‘Will I like this or not?’” said Steve Sturman, Seth’s father.

 

Tesa and Steve Sturman play with their sons Seth and Colby in their home in North Kenai last week. Seth has Crouzon's Ssyndrome, a genetic condition that affects 1 in 250,000 babies that prevents bones in the skull and face from growing properly.

Photo by M. Scott Moon

Seth is getting comfortable on his feet, walking around the living room and climbing up on the furniture of the family’s North Kenai home, though Steve still gets nervous and is there to catch him when the easy-going toddler rolls too close to the edge of the couch.

“He runs around and hits stuff with his head, which freaked us out for a while — that’s a pretty expensive head,” said his mother, Tesa, affectionately referring to her son’s “Swiss cheese skull.”

 

Steve Sturman and Seth play with a ball on the floor of the family's home in North Kenai. Balls are one of Seth's favorite toys, the Sturmans said.

Photo by M. Scott Moon

Seth had his first major surgery at 3 months old, which left a scar running from ear to ear across the top of his head. His second major surgery was at 9 months old, when doctors pulled his forehead out an inch and a half. He’s had several other procedures along the way to help alleviate pressure on his airways, such as having his adenoids and tonsils removed. He has a shunt running from his skull to his abdomen to help drain away excess fluid, and after a recent trip to Seattle revealed some abnormal sleep patterns, he’s been fitted with a special mask that fits over his nose to help him breathe easier while he’s sleeping.

All that may sound anything but normal for a 2-year-old, but for Steve and Tesa, everything is relative. In fact, when Tesa gave birth to the couple’s second child about four months ago, a healthy, happy boy named Colby, she and Steve had plenty of questions for the hospital staff.

“So, what do you normally do after a baby is born? Because we don’t really know,” is what Tesa asked of the maternity ward nurses.

 

Tesa Sturman watches from behind a two-way mirror at right as Annette O'Connell, a speech language pathologist at Kenai Kid's Therapy, works with Seth during one of his three weekly therapy sessions. He receives physical and occupational therapy in addition to the communication support.

Photo by M. Scott Moon

Colby’s birth was a very different experience than that of their older son — night and day is how Steve put it.

Steve said prior to Seth’s birth, he and Tesa went to birthing classes and were told not to be alarmed if their baby’s head was a little misshapen — that’s normal.

However, when Seth’s appearance drew concerned looks from the doctors in the room, the Sturmans began to worry. Seth’s head was clover-shaped, with large bulges on either side, and he was having trouble breathing — blue as a smurf, according to Steve. They were told their child might be deaf and blind, or that he might have Down syndrome, a big surprise after what Tesa described as a perfect pregnancy. Just a few hours after his birth, Seth was on a Life Flight to Anchorage with his father.

 

O'Connell and Tesa Sturman talk about Seth's progress following the therapy session.

Photo by M. Scott Moon

That’s where Steve finally got some good news about his new son. As luck would have it, a doctor from Children’s Hospital in Seattle was visiting the Anchorage hospital — one of just a few visits from Children’s Hospital physicians each year — and immediately diagnosed Seth’s condition: Crouzon syndrome, a genetic disorder in which the skull doesn’t grow properly. The holes in Seth’s skull developed because the bone dissolved to make way for his brain.

While Seth’s condition is serious — surgeons must open up his skull periodically to make room for his growing brain and alleviate pressure on his airway — there also was some relief for the Sturmans in knowing the condition can be treated.

“The first person who told me any good news was my stepmom. She went on the Internet and found some information,” Tesa said.

 

O'Connell uses flash cards to help reinforce communication skills during a therapy session for Seth. Nearly 2 years old, Seth uses American Sign Language and some speech to communicate with his parents.

Photo by M. Scott Moon

On the recommendation of another parent dealing with the same challenges, Seth has been going to physical and speech therapy. His development is a little bit delayed — not because of Crouzon’s, but because of all the time spent recovering from surgeries. He has trouble forming words, but he has a sign language vocabulary of about 25 or 30 words to tell his mom and dad how he’s feeling and what he wants.

Looking back at Seth’s baby photos, Steve and Tesa are amazed at the changes in Seth’s facial structure since he was born. The bulges on the side of his head — where his brain had actually grown through gaps in his skull — have disappeared. The surgery last year to pull his skull forward has given him a defined forehead — and helped keep his eyeballs from popping out, which they occasionally do with just his eyelids and no sockets to hold them in place.

Seth’s face is still squished together in the middle, leading to concerns over his breathing. Steve and Tesa are hoping the new sleeping apparatus will work and doctors won’t need to do a tracheotomy before Seth’s next major surgery in a year and a half, when doctors will fit him with a titanium frame that will fit over his head with screws attached to his facial bones to reshape his face.

Steve said he’s sometimes caught off guard when he notices people staring in a restaurant or at the grocery store. He doesn’t mind answering questions about Seth, but the long stares become off-putting.

“We look at him, and he looks pretty normal, compared to how he used to look,” Tesa said.

Through it all, Steve and Tesa have remained positive, willing to take each day as it comes.

“Lucky for me, I married someone really easy-going. She keeps it together better than I do,” Steve said.

They have relied on their faith, family and friends for strength — and a very supportive Nikiski community. When Seth was born, a hat was figurwatively passed around the community, and those donations helped the Sturmans stay afloat while they sorted out insurance coverages and figured out how they would be able to financially take care of Seth. Seth even has become a bit of a local celebrity in Nikiski.

“That’s the nice thing about living in a small town. We’ll go out to the pool, and people will say, ‘Hey Seth, how’re you doing?’” said Steve.

“With Seth, they’ve gone through some pretty strong stuff,” said Harold Lewis, pastor at First Baptist Church of Port Nikiski, where Steve and Tesa are in the congregation. “People are exceptionally willing to help. I don’t know of any family in our church that wouldn’t reach out and help. Not only ours, but I think our whole church community has been helpful to them, even people that don’t go to church have helped them.”

Faith is what brought the couple together in the first place. Steve was home visiting from Idaho and tagged along with a friend to a Bible study group for young singles. When Tesa made her entrance, the only empty seat was right next to Steve.

Faith has gotten Steve and Tesa through the anxious moments each time Seth faces another surgery.

“We’re all prayed up — it’s going to be all right,” Steve said. “It’s been a blessing to have everybody let us know they’ve been praying for us.”

Steve and Tesa consider themselves blessed to have family in the area; Steve grew up in Soldotna, where his parents, Fred and Mary, still live, and Tesa is a Nikiski High graduate. Her parents, Jim and Robin Allemann, live nearby.

They also have friends and family in the Pacific Northwest, giving them plenty of shoulders to lean on during their frequent trips to Children’s Hospital.

Bill and Danita Parrish insist on baby-sitting Seth, and now Colby, a couple of nights each week so Steve and Tesa can have some quiet time together — date night, they call it.

“He’s probably the most content baby I’ve ever been around, very smiley. He brings a lot of happiness into our home,” said Danita Parrish. “... He’s just part of our family.”

Parrish, who is friends with Tesa’s family and has watched her grow up, called the Sturmans “an awesome family.”

“I have never, ever heard a negative anything about anything they’ve gone through with Seth. They’ve always been upbeat and positive,” she said. “They’re just really positive people. They look for the positive things.”

Seth still has a long road ahead of him. The frame doctors will place over his head next year will have to stay in place for several weeks; Tesa said doctors have told her he likely will need to repeat the surgery when he’s 8 or 9.

“But by the time he’s 18, he should be good to go,” she said.

Steve and Tesa are concerned about the immediate future, as well, worrying about whether Seth will need a tracheotomy. If he can’t breathe well while he’s sleeping, it could lead to sleep deprivation, which in turn would affect his ability to concentrate and learn, putting him further behind developmentally.

“He’s got enough stuff going on. We don’t want him to not be able to focus and learn,” Tesa said. “There’s no perfect answer, so we’re trying to work out what’s best for us, and best for Seth.”

Whatever the future brings — keep the prayers coming, Tesa said, because you never know what’s going to happen — the Sturmans will continue to try to take everything in stride.

“We’ll take what we’re given and make the best of it,” Tesa said. “He’s teaching us more than we will ever teach him.”

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



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