Marion toddler waiting quietly for the gift of a lifetime

Every time the phone rings at Aaron and Traci Helmer’s house in Marion, their hearts skip a beat.

The call might just be the one they’re praying for-the call that tells them a liver has been found for their son, Wyatt.

Wyatt was born last Oct. 4. Everything looked fine at his first checkup, Aaron said.

“When he was a month and a half old or so, we noticed he was a little bit jaundice colored,” he said.

The doctor and their friends and neighbors said it was fairly common for infants to be jaundiced for a while.

But Wyatt’s yellow color continued to concern them. When their daycare provider agreed he seemed a bit too yellow, they decided not to wait for his regular checkup and took him to see the doctor.

“They ran some tests on him and found out that his bilirubin level was way too high,” Aaron said. “It was about 11 times higher than it should be.”

Bilirubin is produced by the liver and excreted in the bile. Elevated levels may indicate an obstruction of bile flow or a defect in the processing of bile by the liver.

“At that point, they wanted to send us to Wichita immediately to have his liver flushed,” Aaron said. “And then once they started calling around, they decided we should just take him to Kansas City that night. So we made a mad dash to Children’s Mercy that evening.”

They spent 12 days in Kansas City.

“They did all kinds of testing,” said Traci.

Doctors did a liver biopsy and another procedure where they ran dye through Wyatt’s liver to make sure it was exiting properly.

“And it wasn’t,” Aaron said. “His liver wasn’t draining.”

“They realized after that test that he did not have a bile duct,” added Traci.

The missing bile duct was the result of a birth defect, Traci said.

The diagnosis

They were told Wyatt’s condition is called biliary atresia, a serious disease of the young infant that results in inflammation and obstruction of the bile ducts carrying bile from the liver into the intestine.

A Kasai procedure was performed to permit the bile to move from the liver into the intestine.

“In the Kasai procedure, they attached his intestine up to his liver so he could have a little drainage,” Traci said.

“They said, ‘There’s a chance this will work; there’s a chance it won’t. It’s either going to work great or not at all,'” Aaron said.

They were told that for children with Wyatt’s condition, there is a 50 percent chance they will have a liver transplant by age 1, a 25 percent chance of a transplant by age 10, and a 25 percent chance the Kasai procedure will be sufficient.

“They told us right away that in Wyatt’s situation, it wouldn’t work long,” Traci said.

“They sent us home with a PICC (peripherally inserted central catheter) line, which is an IV that stays with him, feeding tubes, and all kinds of equipment,” Aaron said. “At that point we were put on a six-month hold to see if this procedure would work.”

In February, Wyatt got a feeding tube that Aaron and Traci inserted into his nose each night to help get nutrients to his body.

“Between what he eats and the feeding tube, he probably eats twice what a normal kid would,” Aaron said. “He eats like a horse, but his body just doesn’t absorb it.”

Wyatt currently weighs 14 pounds, 8 ounces.

“He’s probably 4 to 5 pounds lighter than other kids his age,” Aaron said.

In May, doctors put a surgical feeding tube in Wyatt’s tummy.

“So he now has a permanent tube in him until the transplant,” Traci said.

On the transplant list

At the end of the six-month trial period, Traci and Aaron knew the Kasai procedure wasn’t working. They began the evaluation process required to get approval for a liver transplant.

Transplant candidates are rated on a scale of one to 40, and Wyatt is a 12.

“A score of one has the least threat of rejecting the liver,” said Aaron. “So he’s relatively low on the scale, which is good because he’s healthy enough that we have time to wait. But unfortunately we may be on the list longer.”

On Aug. 16, they got the good news that Wyatt had been placed on the transplant list.

The average wait for a liver is three months, Aaron said.

“They said it could be one day or it could be one year-there’s no way to tell,” he added.

The new liver must match Wyatt’s blood type, size and condition.

Liver donors may be up to five times the weight of the recipient, Aaron said.

“It’s going to be a child’s liver,” said Traci. “But it could be like a fourth grader.”

The way the liver is removed is also important.

“There are four major blood vessels that you connect to,” said Traci. “If the surgeon doesn’t cut it out correctly, there’s not enough room to connect to Wyatt’s body.”

Aaron added, “He needs the lower portion of the liver, which is odd, so it’s possible that our surgeon will have to fly to wherever the donor is and remove it himself to make sure he has what he wants.”

Experts tell them that Wyatt is the perfect age for a transplant.

“Your body is old enough to take it, but you’re young enough that you heal fast,” Aaron said. “Other than his liver, Wyatt’s totally healthy. That’s a huge benefit. A lot of kids who have bad livers also have other complications.”

Following transplant

After the transplant, Wyatt will be hospitalized in intensive care for five days.

“Then he’ll be released into his own room at the hospital for another two weeks,” said Traci. “And then if everything is going well, he’ll be released from the hospital.

“We have to stay within 45 minutes of the hospital for another two weeks. He’s going to have testing every day, and if something happens we’ve got to be able to be there immediately.”

If Wyatt’s body would reject the new liver after surgery, he would be classified as “status one.”

“That is where you have 72 hours to live. The ‘status one’ children get the livers first,” Traci said.

Following the transplant, Wyatt will have frequent check ups.

“The first year is rough,” she said. “But they said a year after is surgery, he should be down to two medications. One is the anti-rejection drug, and the other helps with liver functioning.”

Wyatt will need those medications for the rest of his life, Traci said.

Once he heals from his surgery, there will be no restrictions on his activity.

“They expect a full recovery,” said Aaron. “In fact, the doctor said he’ll have the transplant, and two months later he’ll be a totally different person.”

The wait

Traci and Aaron can’t wait for that day. In the meantime, they pray and they wait for the phone call to come.

Aaron said they have two suitcases packed and ready to go.

“We’ve got our stuff ready, and we try to keep the van full of gas,” he said. “We’ve arranged to drop (Wyatt’s 4-year-old sister, Jenna) off with Grandma on the way out of town.”

They have everything planned so they can arrive at Children’s Mercy Hospital in Kansas City within four hours.

“We have an hour to be ready to leave the house, and then we have a three-hour trip,” said Traci.

“If we happen to be at work at the time, it will probably take the full hour to get everything done, but otherwise we can probably be out in 30 minutes,” added Aaron.

Aaron works at Ag-Power in Hillsboro, and Traci works at Tampa State Bank in Marion.

Doctors tell them the call will come when they least expect it.

“The doctors just laugh about it,” Traci said. “They tell us the call usually comes when you don’t want it to happen, when you’re expecting something big over the weekend.”

Traci and Aaron agreed that the worst part is the waiting and the not knowing. They try to maintain some semblance of normality in their lives.

“I try not to dwell on it, but sometimes it’s hard not to,” said Traci.

They continually remind themselves that they are much better off than many of the other families they met in the halls of Children’s Mercy.

“We’re getting along good compared to some of them,” Aaron said. “Things could be a whole lot worse.

“People say ‘how do you do it?’ But what option do I have?”

Thankful for the support

The Helmers are thankful that their health insurance plan will cover Wyatt’s expenses.

“They have been willing to work with us, and the hospital has been willing to work with the insurance,” Aaron said.

“We’ve really been blessed with the hospital and the insurance we have,” he added. “And our employers have been awesome.”

They have also been amazed at the outpouring of support from friends, family, neighbors, and the church community.

“People tell us they are praying for us, and we can feel it,” Aaron said.

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