'Hard to pray for a miracle when I already have one'

Kai James Luttmann entered the world on Oct. 25 at Bonner General Hospital and if the prognosis is correct, won't live long enough to be able to read this sentence or to even have a scraped knee.

There is a very good chance that Kai was born with Spinal Muscular Atrophy. If he has the inherited neuromuscular disorder, the longest he would be expected to live is three to six months. There is no cure for SMA.

Kai was born to Ryan and Nikki Luttmann after 42 hours of labor and delivery via a Caesarian section. He was 8 pounds, 14.6 ounces and 21 inches,

Ryan and Nikki have to be the best looking and most civically active couple in and around Sandpoint. Both are tall, smile easily and bring out the best in each other and those around them. They both give more than they take.

Ryan is an engineer with Bonner County and is president of the Sandpoint Rotary Club. Nikki is the head of the club service committee in Rotary. He and Nikki are also on the Bonner County Historical Society's board of directors.

But most people probably remember them as the ones who publicized and personified the push to raise funds for free bathrooms downtown. The 2 Reasons Committee successfully worked with the city to get this project going. The bathrooms are almost done.

They were married in Hawaii on March 1, paid for because Ryan was lucky enough to win Rotary's annual trip to Maui. He did help his odds in the raffle by purchasing an undisclosed number of tickets. He was motivated. He met the love of his life and wanted to marry her.

A short time earlier he proposed to her in between matches of a handball tournament in Kalispell.

Enter Kai.

Kai means harbor or wharf in German, ocean in Hawaiian, key in Welch and warrior in Cherokee.

Kai has hypotonia, which is more than likely a symptom of Spinal Muscular Atrophy. Hypotonia means lack of muscle tone.

SMA is characterized by degeneration of groups of nerve cells within the lowest region of the brain and spinal cord. Most children born with SMA don't survive childbirth.

Nikki was overdue and the decision had been made to induce labor. At 5 p.m., on Sunday her water broke. The decision to have a C-section wasn't what the couple wanted. Even as the medical team was setting up for the operation, Nikki was pushing.

"I was amazed at her strength," Ryan said. "It was a reminder that people can give when there is nothing left to give."

When Kai arrived, the baby didn't cry and there was a concerned hush in the delivery room. Ryan remembers noticing his son's lack of muscle coordination almost immediately.

It would be eight hours before Kai was stable enough for Nikki to see him. At 11 p.m. the next day, Kai was baptized in the hospital room by Pastor Steve Nickodemus of the Christ Our Redeemer church.

That night, the decision was made to let Kai go through the night without an oxygen mask to see if he was stable enough for a trip.

"That was the first time it sunk in that there was a real problem," Ryan said. "The doctors told us they thought we were going to Spokane, but to be ready for anything."

They drove to Spokane — complete with a borrowed oxygen monitor from Sand Creek Medical.

Ryan and Nikki spent the entire next day crying as doctors started eliminating the possibility of less insidious ailments. Ryan would sneak away to a library at Sacred Heart to look up SMA online. Later, he would find the courage to read letters from parents who had lost children due to SMA.

"It broke my heart," he said.

Kai and his family are home now, waiting for test results from Baylor. They will probably learn the diagnosis Thursday. Kai is on a monitor like he has been his whole, short life.

Friends have taken care of meals but guests are kept at a distance.

Ryan and Nikki are struck by the outpouring of support they have received.

Both were very impressed with the professionalism as well as the down-home hospitality and respect they received at BGH. It was in stark contrast to the big city coldness they felt at Sacred Heart.

"Bonner General did everything possible to keep families together," Ryan said. "In Spokane, most families just observed their children and didn't interact or breastfeed."

Ryan met with the Rotary board of directors last Tuesday morning and proposed a project to help BGH.

"How can I give something back to the great people at BGH?" he asked. He personally thanked all of the nurses who helped deliver Kai and knows them all by name.

The Sandpoint Rotary will soon be donating a breast pump and trolley to the hospital to replace the 20-year-old pump there now, courtesy of Ryan. He is also using local Rotary funds and volunteer labor to spruce up the delivery and postpartum rooms that need paint, veneer and shelves. He is also hoping to purchase portable monitors for parents to use for emergency trips to Spokane.

"There are 40 babies born a month at BGH," he said. "One out of the 40 needs to go to Spokane. We want to help that one baby."

Kai's godmother, Colleen Spickelmire, summed it up this way: "We always ask why, when something like this happens, and we may not get to know the answer. God only knows why.

"Kai has wonderful parents, grandparents and friends who will care for him and love him for as long as he is with us. Kai has already made a difference in many of the lives he has touched."

Kai's birth opened up a new world for Ryan and Nikki.

"It's hard to pray for a miracle when I already have one," Ryan said. "I'm proud to be Kai's Dad and I am proud of the woman I married.

"We are planning for the worst and praying for the best."

Amen.

David Keyes is publisher of the Daily Bee. His column runs Tuesdays.