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Family Struggles With Matters of the Heart; Complications After Infant's Surgeries Challenge Parents' Hope for Normalcy

Posted on: Sunday, 9 October 2005, 15:00 CDT

By JOHN FAUBER

It was a joyous spring day as Gina and Jim Spicka walked into their Town of Vernon home with their infant daughter, Paige, hoping, finally, for a semblance of normalcy after a three-month hospital drama.

But in short order, their home life became a nightmare.

Their inconsolable baby was addicted to morphine.

Paige Elizabeth Spicka was born Feb. 10 at Froedtert Memorial Lutheran Hospital in Wauwatosa with hypoplastic left heart syndrome, a congenital condition that leaves four out of 10,000 babies essentially with half a heart. She approached death and spent so much time in an intensive care unit recovering from two major heart surgeries and other procedures, by the time she was released from the hospital, she had been on morphine much of her three months.

Jim and Gina were aware of the problem. Indeed, she was being weaned off the narcotic with methadone when she headed home.

What they did not know was how intense and how long the withdrawal symptoms would last.

In the hospital, there were doctors, nurses and drugs to deal with the addiction. Even though they spent much of their days in the hospital, the couple could go home at night to sleep.

At home, it was just the two of them and a screaming infant.

"At her worst, she screamed for 18 out of 24 hours," Gina said.

Paige could be consoled only when she was held.

"It was a dark time because I had gotten my hopes up," Gina said. "I was beside myself depressed."

Jim finally reached out for help, calling Karen Flood, who lives next door but who knew the Spickas only casually.

"They needed time not holding her to get everything else done," Flood said. "They were just exhausted."

Flood became one of seven women, all neighbors and many of whom the Spickas barely knew, who agreed to take turns holding Paige throughout the day. Working in shifts, they started at 8 a.m. and stayed until 10 p.m. They prepared and brought over meals as well.

Often they sat on a white fitness ball in the Spickas' living room with Paige in their arms and just bounced.

"When there is a drug-addicted baby, you get on the exercise ball and just sit and bounce and hold her," Gina said. "We would just pass her off."

Paige had a drugged, sleepy look on her face, often drifting in and out, but naps were out of the question.

"You just didn't put her down," Flood said.

Letting the baby cry herself to sleep also was not an option. Because her heart had been surgically re-engineered to do things it was never intended to do, a long, intense bout of crying could put enough stress on the organ to be life-threatening. Doctors told the couple to rush her to the hospital if her crying caused her to turn blue.

That happened twice, but both times she avoided a hospital trip when she calmed down and her color returned.

The withdrawal lasted three weeks, without a break. Finally, by early June, Paige smiled for the first time. Her big, green eyes were clear and alert.

She smiles all the time now.

"She's become a baby," Gina said.

A frightening reminder

Fifteen years ago, almost all babies born with Paige's condition died, usually within a few days or weeks of birth. However, throughout the 1990s, as doctors perfected the series of three extensive surgeries needed to correct the defect, survival improved dramatically. Children's Hospital of Wisconsin in Wauwatosa, where Paige already has undergone two heart surgeries, now has a survival rate of about 90% for babies who have the surgery. The hospital is one of the national leaders in treating the condition.

Surviving the surgery is one thing; everyday life is another.

Less than three weeks after the addiction ordeal, the Spickas got an e-mail from Kent and Laura Maly, an east side couple whose son, Christopher, was born a week after Paige got out of the hospital.

Christopher also had hypoplastic left heart, but unlike Paige, his surgery and stay at Children's Hospital was a breeze. He was in and out in three weeks.

They brought Christopher home, and things were going even better. He was eating a lot, gaining weight, and the oxygen saturation in his blood was exceptional.

Gina hates to admit it, but she was envious of how well Christopher was doing.

Then, less than a week after being home, the boy's appetite suddenly dropped off. He started crying and began to turn blue. The Malys called 911. Their son stopped breathing before paramedics arrived.

They rushed him to Columbia St. Mary's Hospital, Columbia Campus, a few blocks away.

Nancy Ghanayem, a Children's Hospital critical care doctor who has revived several hypoplastic left heart babies, was notified that Christopher was headed to hospital. She drove to Columbia St. Mary's to assist the ER doctors.

"She threw her purse and phone down and started yelling out orders," Laura Maly said. "But he was gone."

The Malys eventually sent out e-mails to a few dozen families around the state with hypoplastic left heart children.

Jim read it to Gina at their home.

"I thought, what a jackass I am for ever being envious of them," Gina said.

A few days later, the Spickas attended Christopher's visitation at St. Robert Catholic Church in Shorewood. They walked past a tiny open casket containing a 1-month-old boy in a light blue suit.

More costs, more generosity

It was mid-July, and Gina was standing in her kitchen holding 5- month-old Paige in her left arm, a large syringe tucked under her chin. She put a plastic hose into the feeding tube coming out of Paige's stomach, poured baby formula into the syringe and let gravity do the rest.

In the hospital, Gina often backed away when simple medical procedures were done. But at home, she was becoming a seasoned professional.

Paige has had a stomach feeding tube since after her first surgery in February, and it is likely to remain in for a few more months. She has been on a strict diet with specific amounts of formula that must be consumed each day. If she doesn't drink it all by bottle, the rest goes down the tube. The tube is held in place by an inflatable balloon about the size of a grape under the skin, about an inch above her belly button.A month earlier, Gina, who was home alone with Paige for the first time, went to the crib to get her up.

Paige had pulled the feeding tube out of her stomach, leaving a hole in her belly. In a panic, she used Saran Wrap to cover the opening. She called Jim, a firefighter/paramedic, and the two of them rushed Paige to Children's Hospital to get the tube reinserted.

A short time after the feeding tube episode, Gina returned to her job as a claims manager with an insurance company. She had long since exhausted all of her paid maternity leave and vacation time.

Mysteriously, her paychecks had continued coming.

She found out that co-workers had anonymously donated two months of their vacation time to her.

"The most difficult thing for me is, I'll never be able to thank them," she said.

The donations could not have come at a better time. Shortly before Gina went back to work, their doctor told them it would be too much of a medical risk to enroll Paige in day care because of the potential for picking up an infection.

That meant they had to find and pay for a nanny, an expense that was twice as much as day care.

To finance the cost, they took out a second mortgage on their house.

By August, Paige's medical bills were more than $900,000, but insurance had covered almost all of that.

High-maintenance life

It was 7 on a cool, sunny morning in the flickering days of summer, and the Spicka house was stirring.

Becca Putlitz, the nanny, walked in through the garage door. Paige, her eyes alert, smiled.

Gina came downstairs and removed a syringe and needle from the refrigerator. Because of a blood clot in her leg, Paige has needed daily injections of blood thinner for several months.

In addition to the shot, Paige also gets four other daily medications, given by syringe through her feeding tube.

On Sunday nights, Jim spends about three hours at the kitchen table drawing up all the drugs before arranging the syringes in the refrigerator. It's enough to last the week.

"Our entire vegetable drawer is the pharmacy," Gina said.

Jim put Paige on the living room floor, and Gina swabbed the baby's thigh with an antiseptic.

"I like to give her at least 15 minutes to wake up before I poke her," Gina said as she injected the medication.

Paige let out a little whine.

Standing in the kitchen holding Paige, Gina gave the baby her first bottle of the day. Gina was late for work, so after a few minutes, she passed Paige off to Jim so he could finish feeding her. Paige threw up on his T-shirt.

Jim calmly took Paige onto the living room couch, unscrewed the opening to her feeding tube and poured in the rest of the formula. As a chaser, he squirted in medications from four different syringes.

As the fluids drained into her stomach, Paige looked around the room, content with a pacifier in her mouth.

It's a high-maintenance lifestyle. But the Spickas have begun for the first time since Paige's birth to have a welcome predictability to their days.

The future remains uncertain, though. Paige, now 8 months, will require a third heart surgery in 2007. It's unknown whether her re- engineered heart will hold up for decades, or whether she'll need a transplant.

"Every week that goes by, it gets a little less stressful," Gina said. "There has been a silver lining with everything."

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MENDING A TINY HEART

Journal Sentinel medical reporter John Fauber and photographer Gary Porter chronicled the medical issues facing Paige Spicka in a three-part series in April. The journalists were given extraordinary access to Froedtert Memorial Lutheran Hospital, where Paige was born, and Children's Hospital of Wisconsin, where she was treated. To see the original series and photos, go to JS Online: www.jsonline.com/alive/news/apr05/320949.asp

Copyright 2005, Journal Sentinel Inc. All rights reserved. (Note: This notice does not apply to those news items already copyrighted and received through wire services or other media.)

Source: Milwaukee Journal Sentinel

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