Boys bounce back after liver transplants

Nine-year-old participates in ground-breaking study

Aiden Blomgren, 6, left, and his brother, Miles, 9, play a game of Battleship Jan. 16 at their Lawrence home. In the background are the boys' parents, Jill and Dan Blomgren. Aiden and Miles both had liver transplants at Children's Memorial Hospital in Chicago. Miles had his transplant at age 2 and Aiden at age 3.

Editor’s note:Three Lawrence families share one common bond: They encourage others to be organ and tissue donors. This is the final story in a three-part series on organ donations.

Six-year-old Aiden Blomgren and his brother, Miles, 9, play with their new puppy, Coco, a brown miniature Labradoodle. The boys giggle as they chase each other.

They don’t remember a time when they couldn’t run around.

But their parents do.

“They couldn’t jump. They couldn’t run. They certainly could walk around and do daily living-type things but they just didn’t have the strength for running and jumping and those kind of things,” their mother, Jill Blomgren, said. “They were kind of scrawny looking.”

Miles and Aiden were born with progressive familial intrahepatic cholestasis, an inherited disease that causes progressive jaundice and scarring of the liver. More than 50 percent of people affected require transplants; the Blomgren boys were among them.

“I have been doing this for 10 years, and I don’t think that I’ve met a family who handled not one, but two children having been through transplants with as much grace and fortitude,” said Joan Lokar, nurse practitioner at Children’s Memorial Hospital in Chicago, where both transplants took place.

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While the transplants were tough to endure, it was the not knowing for seven months what was wrong with Miles that was most difficult for Jill and her husband, Dan Blomgren. Eventually, they hooked up with Dr. Peter Whitington, of Children’s Memorial, who described the disease. He also helped develop a biliary diversion surgery that can postpone or prevent a transplant.

Both boys underwent that surgery, but it only bought them time until donors could be found.

As 2-year-old Miles awaited a new liver, his condition worsened, and he reached a point when doctors looked elsewhere for a donation.

“He took a turn for the worse, and he was having problems and we were going to the hospital for blood transfusions,” Dan said. “That’s when they decided, ‘OK, he’s not doing great. We need a liver, and we need a liver now.’ So that’s when they looked at me for Miles.”

Dan and Jill were both matches, but Jill was pregnant. So, they used a portion of Dan’s liver. The surgeries went without a hitch and were done in the nick of time because Miles’ original liver was cancerous.

“If he would have waited much longer, there would have been a huge chance that the cancer would have spread outside the liver and that would have been a huge problem,” Lokar, the nurse practitioner, said. “Thankfully, we got him transplanted right in time, and he bounced back really quickly.”

So did Dan, who walked out of the hospital a couple of days later carrying bags.

“It was a piece of cake,” Dan said. “It was a no-big-deal surgery – minimal pain. I would do it again in a heartbeat.

“If you know of somebody who needs one and you are a match, just do it. And by all means when you die, pass on all of your organs because then you really don’t need them, so why not?”

The couple are grateful to the parents who donated their deceased son’s liver to then 3-year-old Aiden, especially because neither parent was a match.

“It gave our son new life. I can’t express enough how thankful and grateful we are,” Jill said.

And their wait for the lifesaving procedure was short – just three days, thanks to a wedding that kept a doctor from being away at a big convention for transplant doctors on the East Coast.

“Well, it just happens that our surgeon’s daughter was getting married that weekend in Chicago so he was in Chicago instead of at the convention. So when they called and said we’ve got a liver, he was like, ‘Yeah, we can use it.’ “

Aiden’s recovery was a little bumpier than his brother’s because he suffered some respiratory issues and, therefore, endured a longer hospital stay. But he also bounced back.

Long-term, doctors expect the brothers to do about the same, but there are benefits to getting a donation from a living donor.

“There’s a little advantage for a child who received a living donor, like Miles, because we know the donor. We know they are healthy and the time that the piece of liver is on ice is much, much less than the standard transplant,” Lokar said.

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Three years later, Aiden is fine. He has lab work every three months and an annual checkup in Chicago. This fall, he was switched to a new immunosuppressant drug because he was having problems with his enzymes.

Lokar said the anti-rejection medications are potent and can damage kidneys over time. They also can cause cosmetic side effects such as overgrown gums and excessive hair – problems Miles suffered at age 6. The drugs may even increase the risks for cancers.

“These medications are pretty powerful and have really nasty side effects,” she said. “If we can get them off of it, that is only for the best.”

Such is the case for Miles. He is one of seven children participating in a groundbreaking study at Children’s Memorial where living donor recipients are gradually being taken off anti-rejection drugs. Miles took his last anti-rejection drugs Dec. 26 and, so far, is doing well.

The hospital recognizes that participating in the study is a huge commitment for the Blomgrens, especially because they have to travel back and forth to Chicago and get frequent lab tests. In fact, they are heading to Chicago on Monday for checkups for both boys. Miles also has lab work every two weeks.

“It is a scary thing for families because there is always a risk of rejection when you do this, and we’ve had one child in the study who did get rejection and had to go back on more potent medication,” Lokar said. “A majority of the kids have done really great.”

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Today, the brothers are like other children their age. They enjoy playing sports, watching movies and teasing each other.

In more ways than one, the 4-foot Aiden looks up to Miles, who is about a foot taller. When asked what he likes – activities, food, movies – Aiden waits for his brother to answer first. He generally gives the same answer as his brother, except when it comes to his favorite school subject.

“Recess,” Aiden blurts out. Miles can’t decide among art, writing, social studies and science.

But they agree: Sushi is their favorite food. OK, maybe they aren’t quite like other children.