Geneva family owes son's life to heart surgeons

He's determined to climb the stairs.

After he's jumped on his older brother.

Then there's a mad dash around the living and dining rooms.

And a clamber onto the couch.

Nothing miraculous for an 19-month-old, unless that boy has the heart problems of Jerry Nowak of Geneva.

His ability to be a rambunctious toddler is due to the skill of medical workers at Children's Memorial Hospital in Chicago.

So his parents are more than happy to help raise money needed for other families to receive the care they did by telling Jerry's tale during the Aug. 17-18 Radiothon on WTMX (101.9-FM).

No warning

Kristen Nowak's pregnancy was uncomplicated except for Jerry's arrival three weeks early. But he weighed a good 7 pounds when born in January 2006 at Central DuPage Hospital in Winfield.

He wouldn't eat, but the staff told Kristen that's because his blood sugar was low. But he wouldn't eat the second day, either, and was sleepy. Again, they were told not to worry; sometimes babies are tired after going through the trauma of birth.

But on the third day, before discharge, a nurse checking his vital signs thought she heard a heart murmur. A doctor said it was probably nothing, but ordered an ultrasound to be done while Kristen and husband Christian packed her bags to go home.

An hour later, two doctors walked into her room.

"We both just knew; why would they send us two doctors to tell us good news?" she said.

It was bad news, in triplicate. The arteries connected to his heart were reversed, meaning blood that should have gone to his lungs to get oxygen was instead being recirculated to his body full of carbon dioxide; there were two holes in a wall between chambers in his heart; and his aorta was too small.

He also had a horseshoe kidney, in which the kidneys are fused together. None of this was seen on prenatal ultrasounds.

A special pediatric transport ambulance from Children's was already on the way. Jerry needed open-heart surgery.

But they had to wait another three days while the surgical team planned. Jerry was given a drug to prevent the holes in his heart from closing naturally because, ironically, they allowed oxygen-rich blood to mix with the carbon-dioxide loaded blood, meaning his body got some oxygen.

Dr. Constantine Mavroudis, a world-renowned pediatric heart and chest surgeon, was on the case. His confidence in himself reassured the parents. He told them he was the best person to do the job.

"That (surgery) is a very challenging thing. It is challenging for anyone," Mavroudis said.

A baby's heart is about the size of its fist, so there's not a lot of room to work. Mavroudis also had to decide whether to take out the pulmonary artery and replace it with a transplant or hope that the original would grow along with Jerry. And he extended the aortic arch with a patch.

"This is not an operation that could be performed at a local hospital. Optimally it is performed at a large regional children's hospital with all the latest technological advances" and specialized tools, including instruments that are smaller than those used on adults, Mavroudis said.

"And as importantly, the mindset of everyone working with this is that it is a baby."

Making progress

After surgery, Jerry was unrecognizable. Retaining fluid, he ballooned to 10 pounds. He was attached to 12 intravenous lines and a ventilator and he was in a coma. He also bled into his brain and lungs.

But his heart was beating away.

Kristen and Christian took turns spending every other day at the hospital. They yearned to hear Jerry cry, and to hold him.

"I don't think we took a breath until -- well, not yet," said Christian.

The staff at Children's is supportive, but realistic. The Nowaks wanted someone to comfort them and tell them Jerry would be fine, Christian said.

"But he wasn't 'fine,'æ" Christian said, so they didn't use that word -- just that he was doing better, making progress.

Jerry came home four weeks later. He was prescribed nine medications. He was nourished through a feeding tube because he wasn't strong enough to suck and swallow.

Doctors told the Nowaks he might have brain damage, including cerebral palsy, from the bleeding. His lungs were weak from being on the ventilator. His heart problems would cause him to tire easily, doctors told his parents.

"But they forgot to tell him," Kristen said recently, watching Jerry run around their home playing with his brother.

He has $1,000 braces to wear in his shoes and undergoes physical therapy to improve the muscle tone in his legs, a side effect of the brain bleed.

He visits a cardiologist, a neurologist, a neurosurgeon, a urologist and a pediatrician. He works with a pulmonologist and takes steroids via a nebulizer mask for 10 minutes every night to strengthen his lungs.

He gets pneumonia every time he gets a cold because of his lungs' weakness.

And he probably will need to have the pulmonary valve replaced if it doesn't grow along with him.

But in the meantime …

"I don't want to put limits on him," a bemused Christian said. "He is a force to be reckoned with."

Jerry stays with a baby sitter twice a week, when both Mom and Dad are at work; she is an accountant and he is a full-time firefighter and emergency medical technician in Arlington Heights.

So far, he's meeting all the normal developmental milestones, including talking.

Jerry roughhouses with his older brother, who is 5.

"C.J. knows he is looking out for his younger brother," Kristen said.

Praise for care

The Nowaks have nothing but praise for Children's Memorial.

Jerry's primary nurse would call, even on her days off, to check on them. She still calls and stops by the hospital whenever they visit the pediatric intensive care unit after doctor's appointments.

The doctor who took care of him after surgery recognizes Jerry more than a year later and says that bed 42 hasn't been the same since.

For Jerry's first birthday, they asked partygoers to donate money to the hospital instead of buying Jerry presents. For the Radiothon, they have recorded their story, and will man the phones Saturday afternoon.

"They did not just take care of him," Kristen said. "They took care of us."

Children's Memorial Hospital Radiothon

When: 6 a.m. Friday to 6 p.m. Saturday

Who: WTMX radio hosts Eric Ferguson and Kathy Hart

To donate: Call (888) 831-7733, or donate online at https://secure.childrensmemorial.org/radiothon

The cause: All money raised during the Radiothon stays in Chicago and will be used for pediatric research, patient care, education and advocacy efforts.

About Children's Memorial Hospital

Founded: 1882

Location: 270-bed main campus at Fullerton and Lincoln avenues; outpatient centers throughout Chicago and suburbs, including Arlington Heights; partnerships with several hospitals, including Central DuPage Hospital in Winfield, Northwest Community Hospital in Arlington Heights and Sherman Hospital in Elgin

Source: WTMX, Children's Memorial Hospital, news reports