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Published June 29, 2013, 11:42 PM

Robin Huebner Reports: Fargo boy’s transplanted lungs declined by 5 others

Texas Children’s Hospital takes chances when others won’t
HOUSTON – The 10-year-old Fargo boy with cystic fibrosis who received transplanted lungs June 18 wasn’t the first to get a shot at them.

By: Robin Huebner, INFORUM

HOUSTON – The 10-year-old Fargo boy with cystic fibrosis who received transplanted lungs June 18 wasn’t the first to get a shot at them.

In fact, the organs that are breathing new life into Jordan Peterson were turned down by five other U.S. transplant centers.

According to Jordan’s doctor, four of the five patients at the other centers are sicker than Jordan.

“They are Priority 1, ahead of him,” said Dr. George Mallory, medical director of the Lung Transplant Program at Texas Children’s Hospital in Houston, where Jordan had his surgery.

Priority 1 is urgent status – for example, when a patient is on a ventilator.

Jordan was a Priority 2.

But looking at the very first X-ray of the donor lungs, Mallory said it was easy to see why the other centers declined them almost immediately.

White areas made it appear the lungs were not in good shape.

But Mallory wasn’t daunted.

“Brain-dead individuals never have perfect organs,” he said.

“Their body is shutting down, trying to die. But, with patience, we can frequently bring the organ to an acceptable level for transplant,” Mallory said.

‘Art’ of transplantation

That willingness of Mallory and his medical team to be patient paid off for Jordan.

“What they do, they’re leaders,” said Jordan’s father, Dan Peterson.

“They don’t just go by the book,” he said.

In Jordan’s case, Mallory asked to speak directly with the respiratory therapist on the other end – at the donor’s bedside.

And that is an example of what Peterson calls the ‘art’ of transplantation.

With the respiratory therapist on the other end, Mallory developed a strategy to make the donor’s lungs better for transplant.

Still, there was concern.

No one wanted Jordan to go through another dry run.

Three times since the family temporarily relocated to Houston, Jordan and his family received the call that a donor might be available.

In each case, the transplants were called off, either because of the donor lungs’ condition or because bad weather kept the medical team from traveling.

In two of the cases, Jordan was rolled into the operating room.

In the latest false alarm in May, Jordan woke up from anesthesia, clutching his chest and sobbing when he realized the surgery hadn’t taken place.

Peterson said Mallory and his team worked very hard with the donor team to ensure that this latest set of lungs would be a go.

After several hours, they were able to get the donor’s blood oxygen to a very high level.

“We got rid of the white areas on the donor lungs and told our folks to get on a plane to view the lungs firsthand,” said Mallory.

While the procuring surgeon from Texas Children’s examined and retrieved the lungs at the donor’s undisclosed hospital, surgeons arriving from other transplant centers retrieved the young patient’s heart, liver, kidneys and other organs.

Back in Houston, Jordan was readied for surgery, to be led by Dr. Jeffrey Heinle, surgical director of the Lung Transplant program at Texas Children’s.

The first incision was made in Jordan’s chest once it was confirmed the donor lungs were packed in ice and on their way to Houston.

Team effort

Many people have been and will be involved in Jordan’s transplant and after-care, from surgeons, nurses and anesthesiologists to lab techs, pharmacists and nutritionists.

But the process begins with a person tasked with coordinating it all.

Texas Children’s Lung Transplant Coordinator Melissa Nugent said centers get notified by the United Network for Organ Sharing, or UNOS, when an organ becomes available, if the donor and possible recipient are matched in terms of blood type and general size.

Nugent said the “offer” comes in as an electronic document.

It includes information about the circumstances of the donor’s death, current vital signs as the donor is kept alive on life support,

X-rays, lab results and any antibiotics being administered.

It does not include specific details, such as the donor’s name.

“Sometimes we come up first (on the list), sometimes we come up 15th, even 60th based on the location of lungs,” said Nugent.

The process of accepting or declining can take 12 to 18 hours, sometimes even longer.

Nugent said because they work so hard at optimizing the donor lungs, Texas Children’s ends up accepting more offers, resulting in a higher volume of transplants and, she said, better outcomes for patients.

While the work is tedious and stressful, Nugent said it’s well worth it.

Speaking about Jordan, she said, “It’s so nice to have his dad say, ‘Wow, it brings tears to my eyes to see him breathe so easily.’ ”

A second chance

Texas Children’s took Jordan in when several other lung transplant centers wouldn’t or couldn’t do so.

While the University of Minnesota’s lung transplant program would have been very convenient for the family, it doesn’t accept pediatric patients.

Several other centers turned the family down earlier because Jordan had a rare fungal infection in his lungs at the time.

Peterson said even though Mallory hadn’t seen that type of infection before, it didn’t deter him.

“He said ‘Call me crazy, but I think we can help you.’ ”

The Peterson family, including Jordan’s mom, Annette, and his brother Jesse, is thrilled and hopeful about Jordan’s future after the transplant.

Jordan was released from the hospital Friday and, if his recovery goes as planned, he and his family could be home to Fargo early this fall.

There will be bumps in the road along the way.

“The question is not if complications will occur, it’s when and what kind,” said Mallory.

A good support system will be a key factor for Jordan, and family has that covered.

“His parents are as good as they get,” said Mallory.

Jordan had expressed feelings of guilt about getting new lungs, when other children are even sicker.

That’s just the kind of kid Jordan is.

“We don’t always expect a lot from young children, but when properly raised with the right kind of values, they can surprise you with their sensitivity,” said Mallory.

Dan Peterson said he’s not really apprehensive about Jordan leaving the hospital and moving on to the next stage, in part, because of a cue he took from his son.

According to Peterson, Jordan simply looked up at him and said, “You know, Dad, I’ve never felt better!”

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Readers can reach Forum reporter Robin Huebner at (701) 451-5607 or rhuebner@forumcomm.com