The Free Press, Mankato, MN

June 20, 2010

The fight of her life

A young couple's dream becomes a nightmare

By Robb Murray
Free Press Staff Writer

— The ride to the Mayo Clinic can be a cruel one, especially if you’ve got time to think.

If your husband has had a heart attack, if your wife has been in a car accident, or if your baby is on death’s door — making that two-hour drive from Mankato to Mayo gives you just enough time to think yourself crazy, and not enough time to calm yourself down.

When it was their turn to make that drive, Angie and Ryan Heidelberger were shell-shocked.

A day earlier they had everything: a beautiful 8-pound-9-ounce baby girl, dreams of a future filled with coloring books and Play-Doh, and the materialization of a heavenly idea that grew more real as Angie’s belly grew more round.

Today, though, as quickly as that dream became reality, it had turned into a nightmare. Hazel’s health began to deteriorate just 24 hours into her life. And now, after a hasty baptism in the nursery of Immanuel St. Joseph’s Hospital, the family learned it needed to head to Rochester if Hazel was going to have any shot at life.

Hazel’s trip was a quick one. In less time than it takes to watch a sitcom or mow the lawn, a Mayo chopper zipped her 85 miles to the roof of one of the world’s greatest hospitals. She was met by a team of doctors and nurses ready to fix her. When they rolled her gurney through the hospital doors, Hazel — who had only been able to give subtle clues that she was born with hypoplastic left-heart syndrome — immediately became, in the words of one of her nurses, “the sickest patient” at the St. Marys Hospital in Rochester.

Now, her family must make the trip.

The Heidelbergers’ car, rumbling eastward down Highway 14, was a quiet one, and Angie felt helpless. The child who had grown and squirmed and kicked in her womb for nine months was gone, in the hands of strangers. True, Hazel was going to Mayo, one of the world’s finest hospitals. But she also knew babies don’t get flown there in the middle of the night unless the circumstances are dire.

To calm her nerves, Angie played a Josh Groban Christmas album she hadn’t gotten a chance to play in the days leading up to Dec. 25. With Ryan driving, she gazed out at the Minnesota prairie and listened to Groban’s versions of “Silent Night,” “What Child is This,” and “Ave Maria,” and thought about Hazel.

In the back seat, buckled firmly, sat Hazel’s empty car seat. Next to it sat Peggy Goemer, Angie’s mother.

Goemer had left the Brainerd area the moment she’d heard. She’d planned all along to come to Mankato when the baby was born. Spending the first week in January with Angie has been on her calendar for months. But she never dreamed the drive to Mankato would feel like this.

She’d spent much of the drive to Mankato in tears. At one point, as she approached Hutchinson,

a helicopter flew overhead. Having already talked to Angie, and knowing that Hazel’s condition required an urgent helicopter flight to Mayo, she pulled over in a Wal-Mart parking lot to weep and collect herself.

“There was nobody on the road. I didn’t feel safe and I just needed to feel safe for a little bit,” Goemer said. “This is every mother’s worst fear, to lose your baby. And I didn’t know how complicated this was going to be.”

Ryan’s parents had hit the road as well.

“We were all scared to death, but we were really confident she was in the best of hands,” Linda Heidelberger said. “She was the biggest baby in the nursery, she was healthy, she’s going to be OK. But, of course, we knew nothing about this syndrome.”

Not many people do.

One in 100 babies, or about 40,000 annually in the U.S., are born with some kind of congenital heart defect, according to the Children’s Heart Foundation. Hazel’s form is the rarest. Of all the children born with heart defects, between 4-8 percent of them will have HLHS.

The foundation estimates that nearly twice as many children die each year from congenital heart defects than from all forms of childhood cancer combined, yet funding for cancer research outstrips congenital heart defect funding nearly 5 to 1.

The ride begins

Mayo Clinic doctors were waiting for Angie and Ryan to arrive, and by the time the family got there, they’d pieced together Hazel’s medical puzzle.

They work on these kinds of cases all the time, they told the family. With a little luck, Hazel will be all right. They gave her an 80 percent chance, and many kids who come here with HLHS go home. There was no reason to think Hazel wouldn’t be just as lucky.

For a kid who left Mankato with no one knowing why she was turning blue, this was a much-needed shot of good news for her and her parents.

“I went to bed feeling pretty confident,” Angie said.

Then came Monday, a day Angie called “overwhelming.”

They spoke with the surgeon, people conducting medical research, social workers, someone trying to line up housing for the family, hospital staff who wanted to show the family on which floor they’d be staying.

Back in the neonatal intensive care unit, Hazel was having one of the busiest days of her life as doctors conducted a battery of tests.

Later that evening, the Heidelbergers got a gift: Although Hazel was sleepy, her health was holding up amazingly well, and they were allowed to hold their baby for the first time since they left Mankato.

They held her for nearly two hours, confident the doctors here would save her, that they’d fit her into that 80 percent of HLHS kids who leave the hospital alive.

“She snuggled into my chest and slept right through her mother’s sobs. Who would have thought a kiss or touch could be so special?” Angie wrote on her Caring Bridge site that day. “They closed off the area for us three to enjoy time together. All of her vitals stayed strong and because she was doing better than they expected, Ryan got to hold her too. Two hours later it was time for her to be put back. Those two hours were the best moments of my life. No matter what happens tomorrow I will always remember her touch, smell, and seeing her and Ryan together.”

Surgery No. 1

On Tuesday morning, Hazel was scheduled for surgery.

She went in at 7 a.m., and didn’t come out again until early afternoon. When they finally got to see her, she was hooked up to a machine that would remain her companion for the rest of her stay at Mayo, the ECMO machine.

ECMO stands for extracorporeal membrane oxygenation, and the machine serves as a heart and lung bypass for patients whose hearts cannot function on their own. Essentially, because Hazel’s heart had only three chambers, it had to work extra hard to push blood to her lungs where it could pick up oxygen and carry it around to the rest of her body.

The Heidelbergers met with the surgeons who’d opened up their daughter’s chest, and he had some good news: Hazel’s heart didn’t appear to be as bad as they’d thought. On the other hand, they’d found she had pulmonary hypertension. She’d be hooked up to ECMO, they told them, and now they just had to wait.

When the Heidelbergers went to see Hazel after surgery, they were horrified. She looked swollen and bruised.

“I said, ‘She looks dead!’” Angie said.

By the next morning, Hazel looked much better. But because she was on ECMO — a bargain that comes with connections to various tubes and wires — Angie and Ryan couldn’t hold her.

But they stayed with her. And when they couldn’t, others did.

Peggy Goemer was one of the people who made sure Hazel never spent a minute of her life without a family member present.

Goemer worked what she called the late shift.

“That was when I’d talk to her,” she said.

She’d tell Hazel about her mom and dad, and how sorry she was that she wasn’t there for the birth. She sang to her.

“Angie’s dad had brought a book about camping and fishing and so I’d read that book to her and tell her that her daddy would teach her how to fish, because that’s what he wanted to do. Angie liked to fish, too.”

“I talked to her about the animals on her bed,” Goemer said, struggling through tears as she recalled those nights, “and the stuff you talk about when you have a sick baby ... That was my time with Hazel ... The only time I had ... I’d just look at her little face and talk to her.”

The setting, while morose, allowed family to bond.

“We all camped out in this room,” Linda Heidelberger said. “We all had computers, we were all waiting for Angie to update Caring Bridge because she explained things so well. That kind of kept us all going and we all formed different relationships with each other. We didn’t know Angie’s dad that well, and we bonded with him. We saw each other in a different light.”

Linda Heidelberger said they also learned a little more about Angie.

“We knew we were lucky, but now we really know we’re lucky,” she said. “We had no idea that she was such a phenomenal writer, and so comfortable with her religion.

“I don’t know if she thinks our relationship has changed. ... But this really tested our relationship and I think we came through with flying colors. She’s so strong, and such a good mom.”

Wednesday and Thursday were uneventful. Then on Friday, she endured surgery No. 2. This one was done to fix a shunt that had been inserted in one of her heart valves, and it went well.

Oxygen levels went up and they took her off the ECMO machine to see how her heart would perform. The results were encouraging. But, to give her heart time to rest, they put her back on the machine during the weekend.

Bad luck hit her again, however, on Sunday.

Everything that could go wrong

As if things weren’t already perilous enough, Hazel’s kidneys began to fail. Angie, writing on the Caring Bridge site, confessed that all the little hitches holding up Hazel’s progress had her discouraged and afraid.

On Monday, those fears appeared justified as Hazel’s feet and hands started turning blue.

By Tuesday, they switched blood thinners and tried to take her off ECMO. But her blood pressure went up, oxygen levels went down and the amount of blood that had been leaking around her heart had increased. Worse yet, doctors determined Hazel

wasn’t strong enough to endure another surgery to fix it, and her feet and hands were getting bluer.

“I was prepared for her to die that day,” Ryan said.

Angels in uniforms

Hazel affected the nurses who worked on her case, too.

Wes Nigon spent about five days with Hazel. He said it was difficult to see Hazel as just another patient.

“With cases like this, you get to know the family,” he said. “I can’t speak for everybody, but in my opinion, you get emotionally attached.”

Nigon said working in the neonatal intensive care unit puts him in a unique position to see people from all walks of life. He’s cared for kids from broken homes and kids from families whose parents are fighting. He also sees families like the Heidelbergers: tightly knit, close, supportive.

“Realistically our first job is to take care of the patient,” he said. “Then in cases like Hazel’s, the family becomes something we have to take care of and support as well. That’s what a lot of us really enjoy. A lot of us have kids of our own, and there can be somewhat of a connection.”

Nigon, father of two girls, said it’s hard to not think of them when caring for patients.

“A lot of times, when I see kids there, I think of my own kids,” he said. “I don’t put myself in the family member’s shoes, but ... This is something that can happen to anybody.”

Denise Engel was the ECMO specialist who spent more time with Hazel than just about anyone. Because of that, she said, she was able to catch glimpses of Hazel’s personality.

“We pick up on the little things,” she said. “The different facial expressions, raising eyebrows, how energetic they are, even with medicine. She’d make some facial expressions. I remember the ‘OK, what are you gonna do to me,’ look. ... You wish you knew what they were thinking.”

Hoping for a miracle

Wednesday was a critical day for Hazel. After several days of getting bad news, her condition stabilized somewhat. Doctors were actually surprised that she hadn’t gotten worse.

Angie and Ryan got a spark of hope they’d needed.

“That’s when I got my second wind of confidence,” Ryan said. “I allowed myself to hope for a miracle.”

And in a way, they got one.

That night, in a surprise twist, Hazel had what may have been her best night.

No, they couldn’t take her off the ECMO machine, but for 45 minutes Angie and Hazel shared the kind of time Angie dreamed about before Hazel was born.

Hazel’s room was full of balloons and flowers and stickers on the windows — the family’s attempts to transform the sterility of a hospital room into something personal. And Hazel took it all in. Her eyes were wide, she was alert.

Angie made the most of it. She had one of the few conversations she’d ever have with her daughter that night. She’d take her swimming, she told Hazel. She told her of her plans to take her fishing up north and on long walks in lower North Mankato. She told Hazel how she couldn’t wait to rock her to sleep and about the long list of people who couldn’t wait to meet her.

She also told Hazel this: that it was OK to let go, and that tomorrow, no matter what, the tubes snaking in and around her body were coming out.

Angie wept. Nurses brought her tissues. And after 45 minutes of eyes being open to the world, Hazel closed them again and went to sleep.

The next morning, at 6:30, doctors gave Hazel her last shot. She needed to come off the ECMO machine. Babies whose hearts and lungs can’t function on their own at this point have little chance to survive, and Hazel had about used up her chances.

A team of experts was ready to take her off the machine and see how her heart fared.

Angie leaned over and, with a kiss, whispered to Hazel, “Fight hard.”

Doctors wheeled Hazel away, and the Heidelbergers waited for what seemed like forever. Angie went to a room dubbed “the pumping room” — a room for nursing mothers — and sobbed. Her insides twisted. She felt sick with anxiety.

Finally the surgeon emerged.

Hazel, he said, had been off the ECMO machine for 45 minutes, and her heart was working on its own for the first time.

“She’s on the fence,” he told the Heidelbergers. “It could go either way. We’ll know for sure in an hour, but right now it’s between her and God.”

The Heidelbergers started to pray.



Next: In chapter 3, Hazel’s fate is decided, and her mother launches a new nonprofit group to raise awareness for, and help families stricken with, heart defects.