Legacy in the News: Vancouver boy awaits decision on double lung transplant

The Columbian

Tuesday, February 4, 2014

All Alex and Mandy Campbell can do now is wait.

The 9-year-old Vancouver boy and his mother flew from Randall Children's Hospital at Legacy Emanuel in Portland to Texas Children's Hospital in Houston, where they'll remain until Alex can receive a new set of lungs.

Alex has a rare condition that prevents his blood from getting properly oxygenated.

Since arriving at the Houston hospital on Jan. 15, Alex has endured countless tests, exams and interviews with doctors, dietitians and psychologists. Wednesday, February 5, the transplant board will vote whether to add Alex to the transplant list.

"Unfortunately, with kids younger than 12, they don't go by severity, they go by who has been on the list longest," Mandy said Tuesday. "Alex's case is so severe, and that doesn't play into it at all."

Alex is the only child younger than 12 waiting for a lung transplant at Texas Children's Hospital, but there may be more children at other hospitals, Mandy said.

Read what keeps Alex going in The Columbian.

The Columbian and FM News 101 KXL

Thursday, January 16, 2014

Just a few months ago, Alex was his normal, energetic self.

These days, Alex spends most of his time in his hospital bed at Randall Children’s Hospital at Legacy Emanuel. A thin, clear tube runs beneath Alex's nose, supplying additional oxygen.
Before he got sick, Alex liked to play football with his older brother. He loved playing soccer. But because those activities aren't possible, Alex finds other ways to pass his time.

On the morning of Wednesday, January, 15, 2014, Alex and Mandy boarded a medical transport plane and headed to Texas Children's Hospital. There, Alex hopes to be the recipient of a double lung transplant. It's unclear how long it will take to get a transplant. Sooner rather than later, they hope.

"We don't have time to wait," Mandy said.

In early November, Mandy noticed Alex was getting short of breath more frequently. Maybe, she thought, he has mild asthma.

So Mandy took Alex to his pediatrician's office. There, they discovered the amount of oxygen in his blood was low. So low, the medical staff used several different machines to test Alex, believing their machines weren't operating correctly. If the machines were correct, the boy wouldn't be standing there before them, they told Mandy.

Mandy later took Alex to the Emergency Department at Legacy Salmon Creek Medical Center. They immediately transferred Alex to Randall Children's Hospital.
There, Mandy learned Alex is facing a condition more severe than asthma.

Alex's pediatric pulmonologist, William Nichols, M.D., said Alex has a condition called diffuse pulmonary arteriovenous malformation. Typically, unoxygenated blood goes through the lungs to get oxygenated. In Alex's case, his blood bypasses through passages called shunts and doesn't get oxygenated, Dr. Nichols said. As the shunts get bigger, Alex's condition worsens because less and less blood is getting the necessary oxygen, he said. The condition is an abnormality caused by a genetic disorder of the blood vessels, called hereditary hemorrhagic telangiectasia or HHT.

"HHT is fairly rare," Dr. Nichols said. "This manifestation is even more uncommon."

After four or five days in Randall Children’s Hospital, Alex was allowed to go home. He toted an oxygen tank around wherever he went, including school. Alex continued to struggle, even with the oxygen. During a follow-up appointment on Christmas Eve, Dr. Nichols told Mandy that Alex needs a double lung transplant.

"A transplant is our only option," she said.

On his next appointment, on January 7, Alex's blood oxygen saturation levels were so low, doctors admitted him to the hospital again and immediately began work to get Alex transferred to Texas Children's Hospital for a transplant.

"To me, he seems like he should be pretty high on the list," Dr. Nichols said. "But it's hard to predict."

While Alex's condition appeared to come on quickly, Dr. Nichols suspects it's been progressing over the last several months or years. In just the last couple months, since Alex became a patient, Dr. Nichols has seen his condition worsen.

Without a transplant, the condition will likely continue to progress and Alex's oxygen saturation levels will continue to drop, Nichols said. How quickly that could happen is unclear, he said.
The transplant is a significant procedure with serious risks, but it appears to be Alex's only option, Dr. Nichols said.

And it's the only way Alex can return to his energetic, athletic self. 

Read and watch Alex’s story.

For more information contact Maegan Vidal.