Pediatric Heart Care: Patient Stories

Meet some of the patients and families who’ve found lifesaving heart care at OHSU Doernbecher Children’s Hospital.

‘They never gave up’

Meet Ella, who needed heart surgery right after birth and spent weeks in intensive care at Doernbecher Children’s Hospital. That care, her parents say, made sure Ella would grow into a healthy, active kid. Her Doernbecher team “never gave up, and she never gave up,” her mom says.

‘Just a joy to be around’

Dr. Kathryn Holmes (left) with Foxy Kusin and Foxy’s mom, Dr. Shana Kusin
Dr. Kathryn Holmes (left) with Foxy Kusin and Foxy’s mom, Dr. Shana Kusin.

Having Marfan syndrome and a related heart condition hasn’t slowed Foxy Kusin, a vibrant toddler with a big personality.

“She is extraordinarily special,” says Dr. Kathryn Holmes, a Marfan expert and one of Foxy’s heart specialists.

Learn how Foxy’s mom, OHSU’s Dr. Shana Kusin, found out during pregnancy that her daughter might have this genetic disorder. And learn about Foxy’s care with specialists at Doernbecher and Portland Shriners Hospital. Read Foxy’s story.

Diagnosed before birth

Doernbecher patient Jacob Anderson V sitting outside smiling

The parents of Jacob Anderson V knew five months before he was born that he had a heart condition called hypoplastic left heart syndrome. This means the left side of his heart was underdeveloped.

In the months that followed, specialists across Doernbecher and OHSU came together to monitor Jacob’s mom, Bianca Anderson, and her growing baby.

“We were able to compile a customized care plan for Jacob that would be implemented as soon as he took his first breath,” says Dr. Erin Madriago, Jacob’s pediatric cardiologist at Doernbecher.

Learn more about Jacob’s birth, his parents Bianca and Jacob IV, and his care at Doernbecher Children’s Hospital.

Thriving after a heart transplant

Get to know Ethan Ellis, who’s back playing the sports he loves after a heart transplant. Ethan was born with hypoplastic left heart syndrome, a serious birth defect.

He had five surgeries, including three at Doernbecher, before having a sixth for a heart transplant through our partnership with Seattle Children’s Hospital.

Bringing baby home to heal

Doernbecher patient Archer Young at age 6 months

Deana Moretti is a nurse but was still nervous about bringing her baby, Archer Young, home from Doernbecher with a congenital heart defect. She found comfort in our remote monitoring program for families caring for a baby between surgeries.

The program enables parents, using an iPad, to instantly share medical information with their baby’s care team. Learn more about home monitoring and baby Archer.

‘They saved my life’

Doernbecher heart specialists had a team ready when Tylan Hibbard was born. Tylan had already been diagnosed with a rare birth defect, truncus arteriosis. He’s been cared for at Doernbecher with “A-plus people” ever since, his dad says.

Fitness for young heart patients

Doernbecher patient Will Van Dyke
Physical therapist Sarah Staropoli with Will Van Dyke.

Will Van Dyke has had three open-heart surgeries and other procedures after being born with hypoplastic left heart syndrome. But that doesn’t mean he can’t be active.

Learn how Will and other young people can safely exercise with help from Doernbecher’s heart rehab program.

Care for the entire family

Learn why Kirsten Brown went from walking home from school one day to needing a heart transplant. She received a new heart through our partnership with Stanford Children’s Health, with before and after care at Doernbecher.

Back in the game

See how Jordan Young returned to sports after surgery to correct a birth defect called aortic stenosis. “We owe 100% to the care and the focus of Doernbecher and the staff,” his dad says. His mom is grateful to see her son “thriving and happy, and doing the things that he loves to do.”

‘I’ve never felt so safe’

Meet the parents of Sophia Kirkwood, who were terrified when they learned that their newborn daughter had a heart defect. After a complex surgery at Doernbecher, Sophia has grown into a healthy toddler. Thanks to Doernbecher, Melissa Kirkwood says, she and her husband can now dream of seeing Sophia grow up to have a family of her own.

Heart care for life

Photo of patient Melissa Nelson
Melissa Nelson plays an active role in her health care.

Melissa Nelson is a teacher and busy adult thanks to lifesaving care at OHSU when she was a child — as well as through our adult congenital heart disease program. It’s the only program of its kind in Oregon.

More children than ever are surviving into adulthood after being born with a heart defect. They can face challenges such as complications, depression and other issues.

Our program offers a team of specialists for any need. Read more about Melissa and the care at OHSU for adults born with a heart defect.

Fighting for baby Fatemeh

Baby Fatemeh after her life-saving surgery at Doernbecher Children's Hospital

Doernbecher joined an effort to bring an Iranian baby with serious heart defects to Oregon for care in 2017. Fatemeh, then 4 months old, and her family were initially denied entry into the U.S.

Doernbecher heart specialists did surgery to repair a serious heart defect known as transposition of the great arteries. “It was a miracle,” her uncle said afterward.

For families

Call 503-346-0640 to:

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  • Seek a second opinion.
  • Ask questions.

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Doernbecher Children’s Hospital
700 S.W. Campus Drive
Portland, OR 97239
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