The Free Press, Mankato, MN

June 19, 2010

A baby girl, born with a broken heart, gone too soon

Part One: The birth and baptism

By Robb Murray
Free Press Staff Writer

— Normally, they’d be inside a church. The baby girl in a pretty white gown. Mom and dad looking lovingly down into a baptismal font. Pastor wetting the forehead of the church’s newest member.

But that night, as Angie and Ryan Heidelberger stood next to their baby, a baby they couldn’t hold because she was hooked up to an oxygen machine, the baptism took place in a much different kind of sanctuary.

Instead of candles, there are fluorescent lights. Instead of stained glass, there are walls of medical supplies. And instead of rows of family and friends, the witnesses here are swaddled babies — beautiful strangers — in bassinets.

Rev. Paul Lauer wasted no time in hurrying through his shortest-ever baptism. It is shortly after midnight Sunday, Jan. 3. A rescue helicopter will be here soon to carry Hazel away.

No smiles. No photographs with the pastor to hang on the fridge. No luncheon in the church basement. Because no one came. No one knew. But soon enough, everyone within a mother’s screaming distance would know of Hazel, and how she entered the world with a heart that would only give her 13 days.

Hazel was a New Year’s baby, and seemed healthy. She met her family, learned to nurse, had her diapers changed. But by this evening, test results showed signs of trouble. Nurses noticed that Hazel’s heart was racing. Mom and dad noticed she was growing lethargic. No one could figure out why.

A short time later, they’d receive the kind of news every new parent fears: Something is wrong with their baby.

They don’t know it yet, but Hazel was born with hypoplastic left-heart syndrome, which essentially means her heart was born with only three of its four chambers. If found early enough, and with world-class help, babies can pull through. But in Hazel’s case, only a miracle could save her.

For now, all they know is that their baby — the one who kept Angie company while Ryan was away on active duty, and for whom a Noah’s Ark room was waiting back home on Cornelia Street in North Mankato — is in trouble.

That is what led to the late-night call to their pastor. They want Hazel baptized in case doctors never figure out what’s wrong with her, in case she doesn’t survive.

For 13 days, she’d fight. For 13 days, she’d bring people together, strengthen a marriage, inject a renewed sense of purpose into the lives around her.

And for future babies whose hearts come into the world with the odds against them, Hazel would create a fierce advocate: a mother determined to save other babies from the same fate that struck Hazel, and save families the heartache she felt.

Preparing for Hazel’s arrival

In the months and weeks leading up to Hazel’s birth, Angie and Ryan prepared.

“I wanted to get all the projects done around the house that I could. I made Ryan clean and organize everything in our house. All of the cupboards, drawers — nothing was left untouched. I loved it. I kept telling him we weren’t going to have time to do these things later,” Angie said. “We went to all the classes they offered through the hospital. I remember putting our car seat in maybe a few weeks earlier than necessary, but we were so excited. I couldn’t believe that soon I’d have a baby girl in the car with me. I always wondered what it would be like to drive home from the hospital as a family.”

Angie’s mom came down from Brainerd several times during the summer while Ryan was gone to help prepare Hazel’s room.

“I wanted a Noah’s Ark theme so just in case we were surprised at birth with a boy our color scheme would work,” Angie said. “Friends and family threw me four showers, so I had a closet full of everything you could need for a baby. I had a dresser full of pink clothes. I remember looking at how tiny the newborn onesies were and thinking how incredible it was that there was this little person inside me that would be wearing them soon. I washed all the clothes and blankets in Dreft. I made Ryan put the Pack ‘N Play together in the living room so she could sleep there while I was in the kitchen. We had toys placed throughout the house and a cupboard full of bottles, bibs, etc. What we didn’t have we made a run to Babies R Us for the beginning of November. The house was set.”

Angie also read.

Thanks to “What to Expect When You’re Expecting,” she always knew how big Hazel was and what was developing each week. Feeling Hazel kick inside of her, she said, was “the most incredible thing. I couldn’t believe how blessed I was — what a miracle I had been given.”

Every morning when she stepped into the shower, Angie rubbed her belly and said “Good morning Hazel,” and prayed to God to keep her safe and healthy. For five months, while Ryan trained at Fort Sill and Fort Benning to prepare for deployment to Iraq, Angie and Hazel were a team.

Ryan rejoined that team when he returned from active duty. When it got closer to Angie’s due date, Ryan had taken to starting up the family car every few hours — he wanted to be sure that, when the time came, cold temps wouldn’t stand in the way of getting his wife to the hospital.

They succeeded. And at 7:50 p.m. Jan. 1, Hazel became the first girl born at Immanuel St. Joseph’s Hospital for 2010.

“I was great at pushing,” Angie said.

In the hours following Hazel’s birth, Ryan, who shakes hands with the grip you’d expect from a soldier, sang to her the same song he had sung to her before she was born, back when he had to kneel down and sing to Angie’s belly.

“You are my sunshine, my only sunshine,” he sang, “you make me happy when skies are gray.”

They gazed at their little girl, who was now looking around the room, and looking at her parents. This was the little girl they’d seen on a grainy television screen during an ultrasound procedure, the same procedure that, for many with Hazel’s condition, catches the defect and alerts doctors. But in these first few hours, there is no talk of defects or heart trouble. There weren’t  even photographs taken, says Angie: “We were too busy watching her.”

Watching her, holding her hand, and wondering. They wondered what it will be like when they finally get to bring Hazel home, what it will be like to take her fishing, to push her stroller down Cornelia Street and through Spring Lake Park. They’d take her to movies, strap a bib on her and feed her peas and squash while she’s sitting in a highchair in the kitchen. They’d walk her to Monroe Elementary on her first day of school, exult when she finally rode a bike on her own, got her first T-ball hit or performed at her first dance or clarinet recital. They’d get her through middle school, save the photos from every birthday, arrange them all in a collage to show the world she’d made it through high school. And eventually, they’d watch her get married and go on to have her own children.

Hazel. A mommy herself someday. That was the plan.

After spending those first precious moments with Hazel, Angie and Ryan called their parents to share the good news.

Ryan’s parents had already been trolling garage sales for baby toys. Now, finally, they’d be able to use them.

Peggy Goemer, Angie’s mom, had long ago notified her employer that, when the baby comes, she’s going. Her plan was to spend a week helping her daughter, a week she’d been looking forward to for months, and had thought about for years. Nothing was more important than being with Angel. That’s what she calls her: Angel. At work, she’s Angela. With friends, she’s Angie. To mom, she’s Angel.

On New Year’s Day, Goemer wished for luck for Angel — she’d hoped that Angie could have a natural child birth instead of a Caesarean. She got her wish.

Oxygen levels fall

At about 6:30 a.m. on Saturday, Jan. 2, a nurse told Angie that, while Hazel spent the night in the nursery, her skin started to turn blue. Hazel’s oxygen levels were at 90 percent, still not high enough to cause the doctor to worry. But the nurse recommended skipping the morning feeding and putting Hazel on oxygen anyway.

A few hours later, Angie’s father arrived and was the first one other than mom and dad to hold Hazel. He insisted a family photo.

“That’s the hardest one to look at,” Angie would say months later, “because we had no clue. We had everything.”

Eventually, more guests arrive. A grandmother, an aunt, a boss, some friends from church. During the middle of the day, Angie nursed Hazel.

Recalling it months later, Angie says she’d like to have that day over. Instead of being peaceful, it was stressful. Instead of taking in the moment, Angie says she more remembers entertaining guests and haggling with lactation nurses over technique.

Later that evening, guests filtered out. By evening, the Heidelbergers — the three of them — were alone again.

The peace didn’t last long: At 7:30 p.m., the Heidelbergers got their first sign that something was very wrong.

After getting her diaper changed, Hazel began to wail. To calm her, Angie nursed Hazel while a nurse took Hazel’s vitals.

Then she took them again. And after getting the same results, she took Hazel from Angie and whisked her away, saying they needed to run some tests.

The break gave Angie a chance to take a bath, but Ryan went with Hazel. He listened to doctors and nurses talk about oxygen levels. He saw the tangle of tubes running from machines to his baby girl and heard concern in their voices. He knew something wasn’t right.

He called his grandparents. “How’s it goin, Ryan?” his grandmother said.

Ryan began to cry.

Then he called his mother, who was in a fish house on a frozen Lake of the Woods.

“I could hear it in his voice that something was wrong,” Linda Heidelberger says, tearfully recalling the day. “That was horrible ... That was really horrible. You feel helpless. You hurt for your kid ... Ryan said he was scared. I told him I was going to talk to his dad and not to worry. And then Ryan really couldn’t talk anymore.”

Angie overheard Ryan’s emotional phone calls to his family and panicked. She got out of the tub and eventually the Heidelbergers worried together.

Doctors drew blood and monitored oxygen levels. The Heidelbergers waited.

To pass time, they paced the halls, and couldn’t help but notice the paintings and quilts hung in frames on the walls. Beneath each frame were little plaques that read, “In memory of ...”

Finally, a doctor who had been monitoring Hazel’s progress, examined Hazel again. She found Hazel more lethargic than ever and made an ominous decision: not knowing what was wrong with Hazel, the doctor decided to get her to a facility with more experience and expertise dealing with acute neonatal cases. Hazel was to be flown to Rochester immediately.

Across town, at the Mankato Regional Airport, a Mayo One pilot was roused from his sleep. Within minutes, he was behind the cyclic and the blades of his chopper were spinning. He lifted off the tarmac and flew above the  treetops to ISJ’s roof.

A child of God

Before Hazel can leave, however, Ryan had to make one more call. To Angie’s surprise, Ryan had summoned the pastor.

“My first thought was, ‘Wait, we’re going to do this later. I’ve reserved the church and printed the invites,” Angie said.

Rev. Paul Lauer’s phone rang at 11:45 p.m. By 11:50 p.m., he was on ISJ’s maternity floor. Angie and Ryan quickly got him up to speed, telling him about Hazel, her condition, and that a helicopter was coming to pick her up. Angie tells him she’s worried about it not being the baptism she envisioned. Lauer assures her a second baptism could be done later at the church. Angie agrees.

Lauer worked quickly.

In an ante room just off the nursery — a room used by mothers who need privacy to nurse, or for hospital staff to rock colicky babies — the new family, clinging to each other on the precipice of the fight of their lives, stands silently during the sacrament.

“It wasn’t until he started saying the words that I looked at Hazel and realized how serious this was,” Angie said. “She was laying there, her heart pounding so hard, receiving the sacrament. It scared me — this was something done only in extreme circumstances. Yet I felt great peace that she was a child of God forever. No matter what happened.”

A few minutes later, Hazel’s world was thrust into turmoil as doctors and nurses, in a flurry of activity, stabilized her for her first helicopter ride.

Hazel’s parents kissed her goodbye and surrendered her to a team of doctors and nurses. The team wheeled Hazel’s gurney down the hall, past the rooms of healthy babies and happy moms and dads, to an elevator to the rooftop helipad.

At the top floor, glass doors parted and revealed a steel grate-like bridgeway to a cement-topped landing pad, where the pilot waited. They quickly wheeled Hazel’s gurney out into the cold, black night and loaded it aboard. Within a minute she’s ready for take off.

Inside her room, Angie heard the chopper lifting off the roof. Hazel’s going to Mayo, she told herself. They have the best doctors in the world there. Surely, if anyone could save her, Mayo could. Months later, recalling that day, she said, “It never occurred to me it’d be something like this.”

The next 11 days will be a whirlwind. Hazel will cheat death. Rally. Bring people to tears. And before her short life was over, her body would endure a journey few could ever imagine.



Next: In chapter 2 of Hazel’s story, a family makes a solemn trip to Rochester, then stands vigil round the clock, never leaving Hazel alone. She’s introduced to the ECMO machine, and spends an exquisite and alert 45 minutes alone with mom and dad.