Today, Kindergarten. Tomorrow, the World: Heart Recipient Celebrates Milestone First Day

On Aug. 16 Elliot Sazama walked through the doors of St. Paul Elementary School for his first day of kindergarten. It was your typical first day of school — a new backpack, school supplies, picture-happy parents and plenty of excitement.

But the journey to this day was anything but typical.

“I remember when he was a baby and seeing posts from other transplant parents with their kids starting school and wondered if he would ever make it to this day,” said Elliot’s mom, Rachel.

Elliot was diagnosed prenatally with a heart defect known as hypoplastic left heart syndrome. His care team at Children’s Hospital & Medical Center in Omaha had a detailed plan for his first few days of life.

On day five, he had his first open-heart surgery. The surgery was one of two designed to reroute the blood supply from the left side of his underdeveloped heart to the rest of his body.

The first surgery was a success and Elliot went home in three weeks. He had his second surgery at six months old. Another success.

But as Elliot’s family prepared to celebrate his first birthday, they noticed his skin and nail beds were beginning to turn blue. He tired easily and didn’t have much of an appetite.

He was admitted to Children’s Hospital. The positive results of the surgeries had diminished. Elliot was given new medication and went home.

Three months later, he was admitted to Children’s Hospital again, this time with a new reality — transplant.

The wait for a new heart began.

A Journey of the Heart

The Sazamas live two-and-a-half hours from Omaha and Elliot’s declining health meant he could not leave the hospital. Rachel and her husband Mark took turns staying with Elliot in Omaha and caring for their older daughter Lily back home in St. Paul.

They celebrated Halloween, Thanksgiving, Christmas and a new year in the hospital.

Then, on Jan. 13, Rachel noticed Elliot wasn’t moving his left leg. She alerted the nurses and an MRI revealed he had suffered a stroke. Elliot had to be evaluated to see if he was strong enough to remain on the transplant list.

In the meantime, a heart became available. With Elliot’s stability in question, it went to someone else. That same night, he was deemed eligible to remain on the transplant waiting list.

Twenty minutes later, the call came that another heart was available.

Elliot’s transplant took place on Jan. 14, 2013. One month later, Valentine’s Day, Elliot went home with his new heart.

He’s had his share of ups and downs since, but his yearly biopsies have shown zero signs of rejection.

"We Are So Grateful for This Day"

After a year of preschool, Rachel and Mark looked forward to the day they wondered would ever come. The “normalcy” of the day was something to celebrate in itself.

Elliot was excited to see some of the friends he had made in preschool. His favorite part of the day? Playing on the playground, especially the slides.

He’s got big plans for the future, mainly involving tractors.

In the meantime, his family is grateful for each day and the decision another child’s parents made that gave Elliot the opportunity to experience a first day of kindergarten, plus countless big days in the future.

Learn more about the importance of pediatric organ donation from the Lane Thomas Foundation or sign up to be an organ and tissue donor today.

Posted: August 17, 2018

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