For Fintan and family, what a difference a year makes

On Christmas Eve one year ago, Gina and Mark Schiltz were hoping, as they had every day for almost three months, for a really special gift for their 3-month-old son, Fintan.

Their little guy was spending his first Christmas lying in a hospital crib, waiting for a new heart.

This year, he's crawling under the Christmas tree in the living room of their St. Charles home, thanks to the miracle that came through Dec. 26, 2007.

Fintan was born Sept. 18, 2007, at Delnor-Community Hospital in Geneva, the fifth child for the Schiltzes. Nothing about the pregnancy or delivery was unusual. But that night, a nurse in the New Life Maternity Center noticed something wrong with Fintan's breathing. And when doctors examined him, they found he had a dangerous defect in his heart: The aortic valve was blocked, and the left ventricle, a chamber in the heart that pumps blood, was damaged, causing high blood pressure.

He was taken by helicopter to Children's Memorial Hospital in Chicago.

And there he would stay. For months. And months.

Fintan had surgery to open the valve, but the ventricle didn't recover. And so Fintan went on the waiting list for an organ donation.

Last Christmas

On Dec. 25, the Schiltz family, devout Catholics, were visited at the hospital by Cardinal Francis George, who was there praying with and for patients. He prayed over Fintan.

And at 11 that night, word came that a heart was on its way. Surgery was done the next day.

It took Fintan nearly four months to become well enough to go home, in April.

But since then, life's been good.

He's down to five medications, including an aspirin and a calcium supplement, from the 17 the two parents had to double-check each other on with each dosage.

Gone are the puffy face and bushy eyebrows he developed as a result of the steroids he had to take after the surgery.

Gone is the hated nasal gastric feeding tube that Fintan yanked out at least once a day from April to June.

In are the constant barrage of hugs and kisses from older siblings Cecelia, 9; Savanna Rose, 7; Leo, 5; and Neve Sheri, 3.

"He hardly ever cries, unless he's tired or someone is on top of him," Cecelia said.

"He really took off when he got home," Mark said. "I think the fact that we have a large family has been good. The kids just smother him with love and attention."

A sound heart

The heart is fine. Two weeks ago, a routine biopsy showed no signs of rejection, and electrocardiograms and echocardiograms showed it is beating well and structurally sound. "You can hardly even see his scar," Mark said.

They don't take Fintan out to the grocery store, or to church very much, because his immune system is suppressed by the anti-rejection medicine he takes. They want him to get a little older and stronger before doing that.

He has physical and occupational therapy, but the speech therapy has stopped, since he finally figured out that pesky suck-swallow-while-breathing skill - something he missed out on in the hospital because he was fed by tube; suckling would have been too strenuous for his damaged heart and lungs.

He started crawling on hands and knees Monday, but he still uses the "Army crawl," too.

"Cognitively, he's right there" with other 15-month-olds, Mark said.

He's eating regular food and loves yogurt. He's fascinated by the cordless telephone, or anything with push buttons, Gina said. He makes raspberry sounds, grabs stuff off the coffee table, takes his shoes off like any baby.

At 20 pounds, he's on the small side of the growth chart, but Gina's other children tended to be small too, she said.

And he is no longer the baby of the family.

Little sister makes 6

Gina gave birth to Aurelia Therese in October.

"What is a bigger sign of hope than a new life?" Mark said.

Still, they were realistic. "I was really, really monitored," Gina said, having fetal echograms every three weeks to look for heart defects. Fintan's condition was not genetic, but doctors wanted to be prepared anyway.

"I just put my trust in God," Gina said.

Having a little sister should help the Schiltzes refrain from a common tendency to spoil a once-sick child, something the team at Children's warned them about. It will be good for him to not be the center of attention, Gina said.

The Schiltzes know that their gift came at a high price: The death of another infant. The donor baby's parents sent a letter to the families of the children who received the organs. The Schiltzes sent a letter of thanks, along with pictures of Fintan.

"I'm hoping to give them some peace," Gina said, noting this Christmas may be especially hard for those parents.

Reflecting

"I would not change anything about it," Gina said of Fintan's situation. "It is part of who he his, and he is such a blessing to family, friends and the community. So much good and positive has come out of this."

"This story definitely tested our faith, but also really strengthened our faith," Mark said. The parents figured out early on they could either react bitterly and angrily or "embrace the cross" they were given to bear.

"I think that has made all the difference," Mark said.