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New Haven child waits for multi-organ transplant

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Family awaits insurance approval for new liver, kidney

By Stephanie Hornback

Max Dickerson pulled a fast one on the assistant principal at New Haven School when Lent began this year.

New to the area, Mario Riley didn’t know Max very well. So when the second-grader told him with a solemn look that he was giving up chocolate for Lent, Riley, impressed with Max’s dedication, said he’d join him by giving up Mountain Dew. Riley followed through on his pledge – only to learn that Max never ate chocolate anyway.

That’s because he can’t, said New Haven School Principal Cindy Phelps, who witnessed Max’s practical joke on Riley. Chocolate is usually off limits for Max, who was born with autosomal recessive polycystic kidney disease (PKD). The disease causes fluid-filled cysts in the kidneys and can affect other organs.

Max, the son of Jeff and Emily Dickerson of New Haven, is awaiting insurance approval on a liver and kidney transplant. He may also need a multivisceral transplant, which would include multiple digestive organs.

His doctors at Riley Hospital for Children in Indianapolis won’t know the extent of the damage caused by PKD until they begin the liver and kidney transplant – which, depending on whether Anthem approves the procedure, may or may not happen. That’s the point at which the Dickersons find themselves in Max’s journey from a premature baby lucky to be born alive to a bright, loving 8-year-old.

“We’re just amazed at how much he tells us he loves us,” Emily Dickerson said. “It’s just so sweet.”

Complications

The Dickersons knew four months into Emily’s pregnancy there was a problem, Jeff Dickerson said. The ultrasound showed dense kidneys that weren’t producing urine, which is necessary for the production of amniotic fluid. Emily was immediately put on total bed rest, and doctors infused fluid into her womb several times to keep Max vital. He was born seven weeks early, weighing 5 pounds, 4 ounces, and immediately faced a life-threatening obstacle.

Max’s lungs were underdeveloped, and when he took his first breath, one of them collapsed. After a week in the neonatal intensive care unit, he was able to come home, but his struggle wasn’t over.

Max was not a happy baby at first, Jeff said. He was eventually diagnosed with severe high blood pressure, which is common among renal patients, Jeff said.

Spending the first three months of his life with elevated blood pressure caused the left ventricle of Max’s heart to dilate, and a cardiologist was added to the liver and kidney specialists to whom the Dickersons had been accustomed. 

Once his blood pressure was under control, the cardiomyopathy went away, Jeff said. Not so with the PKD.

In addition to damaging his kidneys, PKD also caused Max to have liver fibrosis, a condition in which an organ is compromised by too much connective tissue, and esophageal varices, or extremely dilated veins in the esophagus that are prone to bleeding.

Fluid from his liver backs up into the portal vein that connects the liver and spleen, Jeff said, making the spleen many times its normal size. Though he is small for his age, Max’s belly looks like that of a severely malnourished child, Jeff said. Max is ready to get rid of it.

“He’s really sensitive about his belly and kids making fun of him, and he just wants this surgery so much so he can look like other kids,” Emily said.

The transplant

Not only is Max’s spleen greatly enlarged, it is also vulnerable to rupture. That would cause internal hemorrhaging, which, since Max doesn’t have a sufficient platelet count, could be life-threatening, Jeff said. Max wears a guard around his abdomen during recess or any other vigorous activity.

“He looks like a little Ninja Turtle, which is cool to him in a way, but he’d rather not wear it,” Jeff said.

Max’s doctor sent a recommendation concerning the transplant to Anthem, which has two weeks from receipt to respond. If the recommendation is denied, the Dickersons can appeal twice. A denial is an all-too-real possibility, Jeff said, because despite the effects of PKD on his organs, Max’s liver and kidney function is relatively good. It would be easy for Anthem to look at his blood work and say he isn’t sick enough, Jeff said.

If the transplant is approved, the wait for a donor begins. Bags will have to be packed and ready, and the family will need to leave for Indianapolis without delay as soon as they get the call.

“I’m scared to death, but excited for Max,” Emily said.

Coping

Jeff describes his wife as an “oak,” someone who has learned to stay strong during hard times. Emily lost her parents, Mary Ann and “Toad” O’Bryan, and a brother. Another heartbreak occurred in 2006, when Jeff and Emily’s infant daughter, Mia, died.

Despite knowing they both carried the recessive gene for PKD, the Dickersons decided to have another child after Max was born. There was a 75 percent chance she would not have PKD, Jeff said.

She did.

As a newborn, Mia spent more time in the hospital than Max, unable to come home for a month. When Mia was 3 1/2 months old, Emily finally felt comfortable taking her out of the house. They made a trip to Elizabethtown so Emily’s coworkers could see her daughter.

On the way back on Blue Grass Parkway, Emily looked into the rearview mirror at Mia and realized she had passed away.

“You just gotta deal with it,” Emily said. “That’s what God had planned for us for some reason.”

She said she can’t help but be angry about what her children have had to endure. Jeff gets mad, too, especially when he lets himself remember that Max’s condition could take his life.

“It really just irks me to think he might lose out in the end,” Jeff said. “He’s got all the potential in the world.”

To this point, Jeff and Emily have been able to handle Max’s medical bills on their own. But as they approach a surgery that could cost as much as $2 million, they realize help is necessary. In some ways, that realization was a bitter pill to swallow for the couple, who value hard work and independence.

“Asking for help is a hard thing to do, but something like this is just too much,” Emily said.

They know it’s in Max’s best interest, which helps. So does the kindness of their family and friends, who are working on everything from asking God’s blessing to organizing golf scrambles and tournaments.

“Everyone feels so powerless,” Jeff said. “This is something they can do and have fun at the same time.”

Max

Doctors, hospitals and needles don’t scare Max in the least, Jeff said.

“That’s all he’s known,” he said. “He’s a pro when it comes to blood tests and working with nurses.”

Despite Max’s struggles, his parents have tried not to spoil him, Jeff said. If Phelps’ opinion is any indication, they’ve succeeded. Max never uses his medical condition as a crutch or to get attention, she said. But he still knows how to turn on the charm.

“He has a look that he can give you that can melt your heart,” Phelps said.

“I look forward to having Max through the eighth grade.”

FUNDRAISER

 FORee^MAX DICKERSON

•Golf Scramble to the MAX is April 18 at Woodlawn Springs Golf Course in Bardstown

•8 a.m. shotgun start

•$200 per team or $50 per individual

•Contact John Sanders, (859) 396-6202 or john.sanders@ky.gov for more information.

•Donations payable to the Maxwell Dickerson Benefit Fund are being accepted at Wilson & Muir Bank.