Onalaska Parents Pour Their Hearts Into Baby Born With Only Half of Hers

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The human heart will beat more than three billion times over the course of a normal lifetime, but when Raygen Due was born, doctors predicted that, without surgery, her heart would last for only a few hundred thousand beats — a couple days, at most.

So, with the permission of her parents, Randy and Erin Due, a team at Seattle Children’s went to work. In the first of three needed operations, the team helped Raygen survive the earliest weeks of her life with hypoplastic left heart syndrome, a congenital defect that caused the little girl to be born with only the right side of her heart.

Over the next three months, Raygen remained in the hospital — with Randy and Erin by her side.

They watched their daughter’s tiny heart work double time to provide blood to both her lungs and the rest of her body. They watched her development stagnate as she poured her energy into simply surviving. And they watched themselves — already parents to a healthy 8-year-old girl — grow into tireless advocates for their daughter’s health and safety.

“With her being as medically ill as she was, every day there was major decisions to be made,” Erin said. “I really feel if we weren’t able to do that, if we hadn’t been able to stay with her, she might not be here today.”

Finally, after three months of living in the hospital and the Ronald McDonald House, the Dues brought Raygen home to Onalaska. In tow was a home health-care team including day- and night-nurses, oxygen tanks and tracheostomy care supplies.

Despite the help, the Dues still provided much of Raygen’s care; they learned to supply what the infant’s half-heart could not: a relentless, vital, life-sustaining rhythm.

“Randy and I would do shifts,” Erin recalled. “I would stay up with her til 2 in the morning, then he’d get up at 2 and stay up til about 7 when our day nurse would come.”

Now, Raygen approaches her second birthday on March 23, and her progress is evident. She’s extremely active, and though she can’t yet crawl, she rolls herself, rapidly, from her blanket in front of the television, to her dad’s chair, to her mom’s lap. She’s learned to use her feet as hands — she has some upper body weakness — and with her toes can open doors and drawers, play with her favorite toys and press the buttons on her mom’s Nook eReader.

Still, Raygen faces a raft of developmental challenges that other 2-year-olds do not. Later this year she will undergo an MRI to see if she has had a stroke or has tumors that might impair her physical or mental growth.

“We figure she’s about an 8-month-old, developmentally,” Randy, 37, said. “Those first three months of life were extremely difficult and they really slowed down development.”

But her family doesn’t mind.

“Looking at where she was last year, and where she is today, it’s just amazing. After watching her the first three months, I’m just happy that we have her,” Erin, 30, said. “God blessed us with two miracles, and how can we ever being angry with that?”

 

Erin, Randy and Zoie faced discomfiting uncertainty when, 19 weeks into Erin’s pregnancy, doctors told the family they had “a small concern” about the child’s heart.

Three weeks later, doctors diagnosed the unborn baby with hypoplastic left heart syndrome.

“I was devastated,” Erin said. She’d been trying for several years to get pregnant, and in the process had suffered two miscarriages. Before getting pregnant, Erin had admitted to herself that if she was unable to carry this baby to term, the Due family would, most likely, never have a fourth member.

“I didn’t want a baby shower, I didn’t want people to buy me stuff, I had that fear of — I didn’t want to come home and have this place for a baby that I couldn’t bring home,” Erin recalled.

The mother-to-be couldn’t bring herself to Google the words “hypoplastic left heart syndrome,” so she instead began looking for others in similar situations.

That’s when she met Sisters by Heart and Mended Little Hearts, national support groups for parents of children with severe heart defects. Both had local chapters, and Erin found comfort in getting to know other heart moms.



“They understood my fear,” Erin said. “I have friends that have four healthy kids and they can sympathize, but knowing a mom in my situation — they get the fear aspect of it.”

Through the support networks, Erin and Randy began to learn more about HLHS and the procedures Raygen would need to survive.

The Norwood procedure, the first needed surgery, was performed days after Raygen’s birth. The second, called the Glenn procedure, took place when Raygen was nine-months. The time between those two procedures was the hardest, Erin and Randy agreed.

Neither was able to work regularly — both work at businesses owned by family members who were happy to provide flexibility — and instead, the parents’ lives revolved around Raygen’s care, paid for by Medicaid.

Raygen’s illness also took a toll on her big sister.

“It felt like we left Zoie this little, 8-year-old, little girl, and when we came home, three months later, we got this grown adult,” Erin said. “It’s sad for her to know so much about heart defects. It’s made her mature a lot faster. She gave up a little bit of her childhood for her sister.”

 

Though doctors discussing HLHS prefer to look no more than five years down the road, Randy and Erin are hopeful that with proper care and, perhaps, improved technology, Raygen will lead a relatively normal life.

“Of course she’ll have restrictions. She probably won’t be an athlete, she won’t be a marathon runner. She probably won’t be able to have kids of her own,” Erin said.

But Randy, for one, is confident in his daughter’s determination.

“She does whatever she puts her mind to,” he said. “She doesn’t know there’s anything wrong with her. I can see that in her, that it doesn’t affect her the way it would affect me if it happened to me tomorrow.”

Raygen still faces the third major surgery needed by HLHS babies, but her parents hope that after that procedure, Raygen’s quality of life will be improved. While some children with heart defects opt for transplants, the Dues hope that Raygen will be able to live with her own heart.

To keep family members updated on Raygen’s progress, Erin posts updates and photos on her blog: praying4raygen.blogspot.com.

“The last thing I want to do is call everybody, yet I want to keep everybody informed and thank them for their prayers,” Erin said about the blog.

“She’s everybody’s child,” Randy added. “So many people love her and want to know what’s going on.”

Through her blog, Erin also hopes to increase awareness, she said.

“Being in a small county it can be an overwhelming and lonely place. It can be very overwhelming when you’re told your child will be born with half a heart and you have two options: three surgeries or your baby will pass away within days,” Erin said. “But HLHS is not a death sentence anymore. Raygen and all heart babies are amazing and what they have to go through to live is a journey.”

“We are trying to find joy in it,” she said. “My hope is that Raygen and Zoie have a happy childhood and that they outlive me by many, many years.”

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Lisa Broadt: (360) 807-8237