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2-year-old continues battle against heart defect surrounded by family, Glen Ellyn community

Published: Wednesday, March 27, 2013 12:51 p.m. CDT

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GLEN ELLYN — Two-year-old Glen Ellyn resident Nico Schwartz loves his toy trains. He knows each of his "choo choos" by name.

One time, he decided to add to his collection of choo choos by ordering more than $300 worth of toy trains from his mom's Amazon account using the "one-click" feature. After canceling the orders of all but three trains, Dawn Schwartz thought it best to remove the one-click option from her account.

Nico's love of toy trains is just one of the ways Nico is just like any other boy his age. But there is one thing that sets him apart: his heart.

Nico was born with hypoplastic right heart syndrome, causing the right side of his heart not to develop properly. When he was about 11 days old, doctors inserted a shunt into his heart. And when he was about 8 months old, he underwent a Glenn procedure, which helped his heart oxygenate the blood in the upper half of his body.

Now at 2 years old, Nico will undergo a Fontan operation, which is similar to the Glenn, only this will increase the oxygen saturation in the lower half of his body, making it a more complicated procedure, said his dad, Jim. He will have the operation April 4 at Advocate Christ Medical Center in Oak Lawn.

Because of his heart defects, Nico still drinks baby formula and takes a variety of medicines. His family members always have their eyes on him and have to be careful who comes to their home, to be sure Nico isn't exposed to illnesses that can strain his heart.

But even with the special precautions Nico and his family have to take, he is developing just as any other 2-year-old would and hitting all his milestones, Dawn said.

Part of his development may come from having two older siblings who are always ready to play with him.

"They're just constantly doting on Nico," said Colleen Mocko, a family friend and neighbor. "You can see it."

Ashton, 10, and Maddie, 11, said in addition to loving his choo choos, Nico also knows his way around technology, something his $300 Amazon order can attest to as well.

Ashton said he likes to play with Nico on his family's iPad. The 2-year-old also watches "Blue's Clues" on Netlfix, he said.

Nico knows how to play games on the iPad, including matching games that involve puzzles, Maddie said. Nico also plays with real puzzles too.

Maddie plays piano with her brother and said sometimes he tries to play her oboe. And if his musical talents weren't enough, Nico is actually a double-threat: He's a good dancer too, Maddie said.

And although the rest of the world knows his siblings as Ashton and Maddie, Nico has his own special names for them: Chachi and Mimi.

Just as Ashton and Maddie are always willing to help with their little brother, the entire family does what they can to give back to their community.

Dawn and her husband, Jim, are foster parents, although they don't have any children placed in their home right now. They said they expect to have a placement soon.

Dawn also volunteers as a catechist, or religious education teacher, for fifth graders at St. Petronille Parish and as a room parent at Lincoln Elementary School.

Family members are now reaching out to their community for help with their situation. Both Mocko and Dawn's sister-in-law Christy Tajak have been a big help in organizing efforts, including small things like setting up rides for Ashton and Maddie and meals for the family, helping to take away some of the smaller worries from Dawn and Jim.

The family also is seeking blood donations for Nico. His blood type is A-positive, so anyone with A-positive, A-negative, O-positive or O-negative blood is encouraged to donate, Dawn said.

Those interested in donating blood should call LifeSource at 877-543-3768 or visit www.lifesource.org to set up an appointment for either Thursday or Friday this week. Other donation information is available on Nico's Caring Bridge webpage at www.caringbridge.org/visit/nicoschwartz.

Although the Fontan operation will allow Nico to continue to live with his own heart for now, it is not a permanent solution. Eventually, Nico will need a heart transplant, but his parents hope he'll be able to keep his own heart until he's in his teens or 20s because it will be easier to find a heart for him then. It's very difficult to find a child heart for a transplant, Dawn said.

After the Fontan operation, Nico has a difficult recovery ahead of him, but Dawn hopes he'll continue to be the happy boy he is today.

"I just want him to be happy, whatever that takes. He's a smiley, happy boy, and I want him to always be like that," Dawn said. "Of course, I want him to be healthy. I guess that's what every parent wants for their kid."

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