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Families come together at Tigard's Ladybug Run to raise awareness, funds.



TIMES PHOTO: JAIME VALDEZ - Dana Kwong of Tualatin holds a picture of her baby girl, Olivia, who only lived for a short time because of congenital diaphragmatic hernia.Dana Kwong knew her firstborn child, Olivia, for 40 minutes.

For those 40 minutes, she and her husband held their baby close. They bathed her and changed her diaper for the first and last time. They took time to be alone with her before introducing Olivia to her grandparents and other loved ones. Every minute was precious.

Olivia was a tiny 2 pounds, 9 ounces. She took small, inaudible breaths. Her heartbeat was a slow, quietly diminishing whisper. She never opened her eyes.

Kwong looks up from a thick scrapbook filled with memories, her eyes full of both pain and strength. In the scrapbook are pictures of Olivia, from her first ultrasound when they had no reason to believe she was anything but healthy, to her few moments on Earth. Alongside these images are journal entries by Kwong, quotations and lyrics that stayed with her, mementos from that time.

“You knew what’s coming, but you’re still new parents,” said Kwong. “So you’re happy, but you’re not. It was a flood of different emotions.”

Today, Kwong, who lives in Tualatin, shares Olivia’s story to preserve her memory and to raise awareness about the little-known condition that claimed her life.

She points to an image of her 19-week ultrasound. It was this ultrasound that revealed Kwong was having a girl. It was also the ultrasound which revealed that her baby’s body was not developing properly.

Olivia was diagnosed with congenital diaphragmatic hernia (CDH), a malformation of the diaphragm that allows abdominal organs to move into the chest, restricting lung development. There was a hole in her developing diaphragm, and her organs had moved into her chest. As a result, her left lung and heart couldn’t properly develop.

“I remember praying ‘Whether you live 40 minutes, 40 hours or 40 years, you have your purpose on Earth,’” said Kwong.

Every year, Kwong honors her daughter’s life by supporting the Ladybug Run for CDH Awareness, which brings togethers families with survivors and families with “angels,” she said.

On July 23, the fifth annual run will kick off at Cook Park in Tigard, raising both funds and awareness about CDH, which affects more than a thousand new infants in the United States per year and has a 50 percent fatality rate.

Participants run or walk a 5K or a 10K course through the park. Throughout the race are fun activities for families — such as the Diaper Dash for little ones — and signs and posters honoring stories and memories of life and loss.

Director Liz Dooley founded the annual run in 2012 when her daughter Finley was two years old. Finley was also born with CDH.

“The first few weeks were an up-and-down roller coaster,” said Dooley. “But then she made a turn for the better.”

Finley, who has a genetic mutation that puts her at risk for other serious conditions, will have to undergo close monitoring and follow-up until she’s a teenager.

“The most amazing thing about the race has been seeing families celebrate their babies and also remember,” said Dooley. “It’s a space to remember, to talk about their children.”

The first run kicked off four years ago with around 200 participants raising around $7,000. Every year, the race has grown. Over the course of four years, the Ladybug CDH Foundation has raised over $100,000.

All proceeds go toward the Ladybug CDH Foundation, which donates to medical research and support for families impacted by CDH. So far, the Foundation has been able to donate money to studies at the Boston Children’s Hospital, University of Texas-Houston and the Seattle Children’s Hospital.

Last year, 700 people participated in the run. Among them were Joel and Ashley Fogarty, and their daughter Peyton, who was then 6 months old.

It had only been a couple weeks since Peyton had been released from the NICU, where she had spent the vast majority of her life.

In six months, she had been through surgeries to repair her herniated organs, to fix two holes in her heart, and to put a feeding tube in, because the open heart surgery had the side effect of making her averse to eating.

“We got to the point where they were like, ‘You guys should get friends and family here. She’s not looking good,’” said Ashley Fogarty, who lives in Troutdale. “But then a medication worked and she pulled through.”

She stayed with Peyton for six months, sleeping on a couch in the unit that pulled out into a makeshift bed. She could not bear to leave her daughter’s side, even for small errands.

“I was having a lot of anxiety about, how do you leave your child there?” said Fogarty.

After the open heart surgery, Peyton was a new baby. The gray tinge to her skin turned to a pink color. Her personality seemed to perk up.

Today, Peyton loves to blow kisses and has a smile that scrunches up her entire face. At 17 months old, she babbles to herself and is curious about everything around her. Her parents are looking forward to taking her to the run for the second time.

“We’ll be doing the run for the rest of our lives,” said Fogarty.

Also at the Ladybug Run will be 9-year-old survivor Maddie Hausmann, who calls the race “her marathon,” said her mother, Michelle Hausmann.

Michelle Hausmann said the run gives her a chance to come together with other families, offering hope and solidarity.

“I’m thankful for the opportunity to spread awareness,” said Hausmann, who lives in Lake Oswego. “And it’s helpful for (Maddie) to know she’s not alone, that there are other children and adults who have gone through something similar.”

“I like to run with my family,” said Maddie, chiming in on the phone. She also added that she loves swimming, reading, running with her dogs and hiking with her family.

Maddie’s journey included developmental delays and other conditions, such as significant small stature due to Russell-Silver syndrome. And the complications of CDH continue to be a challenge for her. Just two years ago, she underwent two surgeries due to a bowel obstruction.

It’s a reality her mother has come to accept.

“I’ve recently come to the realization that surgeries could be a part of the future,” said Michelle Hausmann.

But Maddie doesn’t shy away from what makes her different. She looks at and talks about her surgery scars frequently, said Hausmann.

“She’s strong, she’s vibrant, she’s unique, she’s herself,” said Hausmann.

TIMES PHOTO: JOSH KULLA - Josh Fogarty of Troutdale plays with his daughter Peyton, who survived her struggle with CDH.

Dealing with the world

Peyton’s parents fought for her before she was born. The doctor who told them about their baby’s condition seemed unfamiliar with CDH, read from a sheet and encouraged them to end their pregnancy.

“When all you ever wanted to be was a mom, and it took four years to get pregnant, to be told ‘You guys should terminate ... ‘” Fogarty said, breaking off her sentence in disbelief.

When Joel Fogarty, who is a nurse, came home from the ultrasound, he was a mess. But in the weeks that followed, the couple’s survival mechanism was positivity.

Kwong, too, found joy in her pregnancy, despite Olivia’s poor prognosis.

“I just enjoyed being with her,” said Kwong. “We knew that this was the time we had with her.”

But there were times when the visibility of her pregnancy made for uncomfortable situations, from passersby asking how excited she was, to her physical therapy patients bringing gifts for her baby.

“In the moment, I just wanted to escape,” said Kwong.

After losing Olivia, Kwong sometimes dealt with people who minimized Olivia’s life.

“I was told things like ‘Oh, you can always have another a child,’” said Kwong. “Well, she is our child. She is a part of our family.”

Sometimes, Kwong guards her story and her emotions.

“People don’t know how to respond, and I don’t think it’s something they’ve learned how to do,” she said.

When they go to restaurants, Ashley and Joel Fogarty have faced comments and stares because of Peyton’s feeding tube. And when they try to acclimate her to food taken by mouth and she fusses over it, people sometimes give them dirty looks. It embarrassed and frustrated them at first because people didn’t know what Peyton had gone through.

“I think we’re just now embracing it,” said Ashley Fogarty. “It’s a part of our living; it’s our norm.”

TIMES PHOTO: JAIME VALDEZ - Dana Kwong looks through a scrapbook documenting the short life of her baby girl, who died less than an hour after birth from CDH complications.Time preserves some scars

To this day, Kwong is still working through her loss. She compares herself to a veteran who has to keep reliving her trauma.

In fact, when she was first asked to participate in the Ladybug Run, she declined because she wasn’t emotionally ready for it.

When her family did run in the years that followed, it meant a great deal to her son and daughter, now 11 and 10, to witness the spirit of solidarity — and to release ladybugs, a tradition created by race founder, Dooley.

“It’s a fun event,” said Kwong. “It’s a little bit of joy in the midst of sadness.”

As she works through her own grief, she’s reached out to the nurses who helped her, telling them she’s available for other families who need to talk.

Peyton, who will be in a stroller during the race, is also taking her time. While she’s hitting almost every milestone expected of her, she’s lagging behind with her walking.

“We’re on her terms now,” said Ashley Fogarty.

Remembrance

When Peyton grows up, she likely won’t remember the pain and stress she went through. Her parents are grateful that they, not her, will carry the burden of that memory. They saw her on a ventilator. They saw her withdrawals from morphine. They saw their feisty little girl sedated.

But Peyton will likely face challenges growing up. With her compromised lung function, she has to take antibiotics for the common cold to stave off pneumonia. And she’ll probably be limited in the sports she can play. High-endurance activities would be difficult for her.

And she’ll have her scars as reminders of her condition, too, but her parents will encourage her to never be ashamed of them.

“If she ever has issues with her scars, I will tell her, ‘You fought,’” said Ashley Fogarty. “They are her battle scars and she was a warrior, and she fought and she’s here.”

Kwong gets to the last pages of Olivia’s scrapbook. She looks at a picture of Olivia’s gravesite, along with dried baby roses from her coffin.

Every year, on Olivia’s birthday, the family commemorates her memory with cake and a visit to her gravesite. Kwong has shown Olivia’s picture albums to her son Zachary and her daughter Kelsey. Kelsey has expressed sadness at not having an older sister.

“She brings her up a lot in her classroom,” said Kwong. “When they have an assignment, she says she has a brother and she has a sister.

“Whatever questions they have, I tell them. I tell them at their pace,” said Kwong.

She closes the scrapbook. Several weeks after losing Olivia, a few friends came over and helped her put it together.

“I did this scrapbook because I wanted to remember,” said Kwong.

It took her a long time to get out of the pain, because that pain was associated with memory.

“Moving on, you feel guilty. You feel like you’re losing the grasp of what happened,” said Kwong. “I mean, it’s been 13 years for us and I don’t remember every detail.”

In a corner of her living room sits an ivory-colored chest illustrated with lavender. It holds the scrapbook, emails from friends and family, a notebook of their story, special books and some things from her gravesite.

It’s Olivia’s box, and always there.

The Ladybug Run this year will bring together people who are grieving, people who are celebrating and those who are doing both.

“You experience it, and you do what you need to do to get to the next point,” said Kwong. “And you get to the next point, and then you get to the next point. Everybody deals with it how they deal with it. It’s a different journey for everybody.”

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