Former Orioles executive Jim Duquette to donate kidney to daughter

10-year-old girl suffers from rare disorder

  • Former Orioles executive Jim Duquette is donating a kidney to his 9-year-old daughter, Lindsey, who has focal segmental glomerulosclerosis, a rare kidney disorder with no known cure.
Former Orioles executive Jim Duquette is donating a kidney… (Baltimore Sun photo by Lloyd…)
June 03, 2012|Andrea K. Walker, The Baltimore Sun

The problems of a 10-year-old sound something like this.

"Can I pleeeaaase have an email account?" pleads Lindsey Duquette, jumping up and down in front of her mom, Pam Duquette, in the family kitchen in Sparks. "All my friends have email."

It's enough to make any parents roll their eyes. But for the Duquette family — dad is former Orioles vice president turned baseball analyst Jim Duquette — childhood dramas like this secretly make them smile.

A year ago the now rambunctious Lindsey was bedridden and lethargic. She couldn't attend school or play outside with her friends. She was too weak to even feed herself.

A rare kidney disorder with no known cure, focal segmental glomerulosclerosis, had destroyed her kidneys and seemed to have taken her soul. Last year she entered end-stage renal failure and her parents made the painful decision to have both of Lindsey's kidneys removed.

The young girl's nearly lifelong battle with her disease seemed to have reached its worst point — until kidney removal proved to have an unexpected affect. Lindsey's old self returned.

Without scarred kidneys leaking protein into her urine and weakening her body, she was once again an energetic kid. The downside was daily dialysis treatments needed to do the job her kidneys once performed.

But soon Lindsey will have a new kidney and hopefully an end to dialysis and the start of a normal life.

On June 4, she and her dad plan to be wheeled into an operating room at Johns Hopkins Hospital where Jim Duquette will give his youngest daughter one of his kidneys.

The three to four-hour transplant procedure won't cure Lindsey. There is a 50 percent chance the disease will attack the new kidneys. But it also could put her in a form of remission, an outcome the family hopes for.

Like a typical baseball man Jim Duquette often looks at life from a perspective of statistics: What's the percentage? What are the odds? He always hoped Lindsey would be one of the 90 percent of children who outgrew her illness. Instead, she is one of the 10 percent who didn't. But he said there is new hope, that with the kidney transplant, this time the odds of success favor Lindsey.

"This has been a tough road so we're realistic," Duquette said. "But we're hoping this will finally be the time life gets better for our little girl."

Lindsey seemed like a healthy toddler until one summer day in 2004.

Aug. 27 was Jim and Pam Duquette's 10-year wedding anniversary. They celebrated in a suite at a New York Mets baseball game at Shea Stadium, where Jim was general manager. Their other two children, Lauren and Matthew, also joined them.

Before the game, 2-year-old Lindsey's ankles and feet began to swell and she seemed sluggish, worrying Pam Duquette. A Mets executive also in the suite offered to call his wife, who was a pediatrician.

When the pediatrician heard the symptoms, she worried it could be minimal change disease, which damages vessels inside the area of the kidneys where blood is filtered and waste is removed. Scarring of these filters — called glomeruli — allow protein to leak from the blood into the urine. It is the most common cause in children of a condition called nephrotic syndrome, a group of symptoms that include protein in the urine, low protein levels in the blood and swelling. Minimal change disease can advance to FSGS.

Some children can manage with steroids and other medications. For others like Lindsey, the steroids become too much and their condition progressively gets worse.

Lindsey was rushed from Shea stadium to Flushing Hospital and transferred later that night to Montefiore Medical Center in the Bronx where the pediatrician's guess was confirmed.

Lindsey's heart rate was high and protein levels in the blood low. She would stay in the hospital until Thanksgiving Day as her frail body worked to fight off side effects of her newly discovered kidney condition. She was put on a respirator when she had problems breathing and placed in intensive care because of peritonitis — a deadly condition that causes inflammation of the mebrane lining the abdomen.

"It didn't seem real what was happening," Pam Duquette said. "She was so sick."

The next few years of Lindsey's life were spent in and out of hospitals and trying different cocktails of drugs in hopes of stabilizing her condition. Some of the steroids made Lindsey swell up like a balloon. One experimental drug she tried listed fatality as a possible side effect. Another made her cheeks burn. The ice packs she used to cool them gave her frost bite. Her bones became brittle and her growth slowed.

"The steriods were eating away at her body," Jim Duquette said.

As his daughter suffered, Jim Duquette was released from his job with the Mets and replaced by Omar Minaya. If it was another time in his life, he might have been more devastated. Instead, his daughter's illness kept things in perspective.

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