Mike and Teresa Lutz

Story Courtesy of Peoria Journal Star written by Leslie Renken

When meeting Mike and Teresa Lutz’s four handsome boys for the first time, people frequently comment on the lack of girls.

Whenever that happens, 6-year-old Charlie Lutz starts talking about his little sister.

“He wants people to know that there were five children,” said Teresa during an interview in the family’s Dunlap home.

Photo Courtesy of Baillie Photography

Gianna Lutz would have been 4 years old in February. Diagnosed at 20 weeks with a fatal neural tube defect called anencephaly, she died in utero at 36 weeks. Her skull never formed and her brain was seriously damaged.

Though the first weeks after diagnosis were very painful for the Lutzes, the 16 weeks between diagnosis and death were absolutely precious. Mementos from that time are scattered around their home. A little hardcover book, a project Teresa started in the days following diagnosis, records that time in words and photographs. The book is so frequently viewed it’s starting to lose pages.

Termination of the pregnancy was offered after the Lutzes learned nothing could be done for their daughter. They didn’t even consider it.

“We are Catholic, and we believe that each life is precious. But even more than that, ending her life early wouldn’t have taken away the pain of losing her,” said Teresa. “It would have just taken away the little time we had with her, and robbed us of getting to know her.”

‘We weren’t going to be alone’

The morning following the diagnosis, Mike and Teresa met with Dr. Michael Leonardi at OSF Saint Francis Medical Center’s Maternal-Fetal Diagnostic Center.

“He did another ultrasound and confirmed what our OB had told us. When he started telling us our options, we cut him off. We told him that we were going to carry her to term, and he immediately switched gears and he said, ‘What are you going to name her?’”

It was an important moment, said Teresa.

“At that point he was validating her as our daughter. She wasn’t just ‘something wrong.’”

Leonardi is part of a team of physicians, nurses, counselors and support staff in the hospital’s Perinatal Hospice program.

“Perinatal Hospice is a movement across the country that’s been going on for a long time,” Leonardi explained during a recent interview at the hospital. “We realized that people with a prenatal diagnosis that’s going to be life-limiting need a different type of OB care. Usually families that are expecting are planning for the future — these families are planning a funeral.”

It’s a 180-degree perspective change that only a small percentage of prospective parents face, so most obstetricians aren’t equipped to deal with it. The Maternal-Fetal Diagnostic Center is where patients facing a dangerous pregnancy are referred, making it the natural home for the Perinatal Hospice program.

During that first visit with Dr. Leonardi, the Lutzes were given resources to help manage the difficult time. It was an extraordinary relief.

“We knew then that we weren’t going to be alone,” said Teresa. “That was the scariest thing, doing it all alone.”

Every case is different, from the medical issues to the emotions involved, so a whole team of specialists helps families assess the situation and formulate a plan. For parents who know their baby is going to die, memory-building is an important part of the process. Leonardi had the Lutzes come in for an ultrasound every two weeks — not only was he checking on the progress of the pregnancy, he was making photographs of Gianna that would be treasured forever. As time went by and the Lutzes better came to terms with the situation, the visits became fun for the family.

“He encouraged us to bring the boys,” said Teresa. At the time they had two boys, Ben, 4 , and Charlie, 2.

“We actually laughed a lot,” said Mike. “Dr. Leonardi let the boys play around with the ultrasound table. He always had candy for them and a Diet Coke for Teresa.”

Though the visits often revealed more issues with Gianna, Leonardi didn’t dwell on them, said Teresa.

“He always pointed out the good things about her. He always said how happy she looked, how comfortable she looked.”

An important aspect of Perinatal Hospice care is counseling. Pediatric supportive care counselors from the nearby Children’s Hospital are available to talk with any family member, young or old. They are even available years after the fact if issues re-surface.

At one point, Teresa spoke to a counselor with questions about discussing certain issues with her sons. Throughout the process, the Lutzes kept their boys informed — the day of the diagnosis Ben, who was sure the baby was a girl, eagerly met his returning parents at the door.

“We told him right away,” said Teresa. “We were so upset. Ben was really sad, but he understood. Sometimes he would talk to my belly and tell Gianna that she was gonna go to heaven.”

Though there was sorrow, there were fun times, too. Every Sunday, when Gianna turned a week older, the family had a little birthday party.

“We’d sing to her and blow out candles and have a little sweet,” said Teresa. “I think the boys liked the candles and the sweets.”

In many ways, those weeks of pregnancy seemed perfectly normal. Gianna’s tiny fists and feet could be felt kicking inside Teresa’s belly. The infant was quick to react when her brothers spoke to her, and she was always more active when Teresa ate certain foods.

“Baby Gianna loved Chinese food,” said Teresa. “We couldn’t say no to baby Gianna.”

At one point the family visited a professional photographer for a portrait. Everyone was smiling, and Teresa’s swelling belly was prominent beneath her white T-shirt.

“We didn’t know if she would be born alive, and we wanted a family portrait. She was still alive then,” she explained.

Making the boys partners in the process helped them understand and accept what was happening in their family. Shortly after Gianna died, Ben started incorporating his sister into artwork.

“For the longest time Ben would include her in family drawings — she was always up in the sky,” said Teresa. “It’s a healthy way of dealing with it. I hear people say ‘I couldn’t put my children through that,’ but I think it taught them love.”

Comforted by the long goodbye

As the due date grew closer, members of the Perinatal Hospice program helped the Lutzes formulate a plan for every possible outcome.

“It was important to us that, if she was born alive, she be baptized,” said Teresa. “And it was important for the boys to meet her. And if she survived longer, we wanted to take her home to die.”

In the end, however, baby Gianna had her own plans. On a Friday, Teresa noticed Gianna wasn’t moving.

“We tried everything to get her to move,” she said. “The boys talked to her, and I ate some sugar and we poked her. We said if she doesn’t move by morning we’d call Dr. Leonardi.”

On Saturday morning, Dr. Leonardi was on his way to St. Louis with his family, but he turned around to meet the Lutzes at the hospital.

“He did an ultrasound, and I remember he turned the screen around and said ‘This is her heart, and it’s not beating.’ And he held my hand while I cried. He was on one side, and Mike was on the other.”

Gianna Therese Lutz was born at 4:08 p.m. Sunday, Feb. 19, 2012, the same time and date recorded on her death certificate. Dr. Leonardi delivered her, and both sets of grandparents were waiting to meet their granddaughter. The family spent lots of time with tiny Gianna, moments that were photographed and printed in the little book Teresa made.

In the years since losing Gianna, the Lutz family has grown by two — Dominic, 3, and big, strapping John Paul, who, at 16 months, is already trying to keep up with his brothers.

Each pregnancy has brought with it a certain measure of fear, so Dr. Leonardi keeps a vigilant eye on his patient.

“Dr. Leonardi has become our permanent obstetrician,” said Teresa. An expert at catching anomalies on the ultrasound, Leonardi’s care has been very reassuring.

The Lutzes say if issues arise in future pregnancies they will deal with it exactly as they did with Gianna. Rather than prolonging the pain, carrying Gianna until her natural end helped the family come to terms with the tragedy. The Perinatal Hospice program provided support to make the experience as positive as possible.

“We had time to prepare,” said Mike. “It was such a blessing to find out ahead of time.”

People sometimes choose termination out of a lack of support and knowledge, said Leonardi.

“People always think the child is in pain, and they are not,” said Leonardi. “You can see it on the ultrasound.”

And some believe that early termination will reduce emotional suffering as well, but Teresa believes it only makes things worse. She points to a 2014 study by Duke University that surveyed a group of parents who lost children to anencephaly:

“Women who terminated reported significantly more despair, avoidance and depression than women who continued the pregnancy. Organizational religious activity was associated with a reduction in grief in both women and men. ... There appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis ...”

The long goodbye helped carry the family through the pain of losing Gianna, a pain that couldn’t be avoided.

“People want to avoid suffering, but when you love people, you will sometimes suffer,” said Teresa. “You can’t avoid it. The only other choice is not to love.”

Leslie Renken can be reached at 686-3250 or lrenken@pjstar.com. Follow her on Twitter, @LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.