Patient Stories

In honor of American Heart Month, we are sharing a series of stories about some of our incredible heart patients who have overcome the odds.

Nobi Johnson was a seemingly healthy, charismatic and extremely athletic 13-year-old girl. She excelled at sports and was a star on the basketball court and soccer field. There was nothing she couldn’t do if she put her mind to it, which made the diagnosis of an anomalous coronary artery difficult to understand. Sports were out of the question, due to the unforeseen heart defect. How would Nobi find her happiness again? It would take over a year, but Nobi would find herself back on the court, thanks to her determination to play again and Seattle Children’s and Mary Bridge Children’s Regional Cardiac Surgery Program. Read full post »

Last fall, 20-year-old Milton Wright III was given a death sentence. Today, he is expected to live a long, healthy life. This is the incredible story of how two determined researchers and the parents of a young boy came together to save him.

On Sept. 18, 2013, 20-year-old Milton Wright III walked into Seattle Children’s Hospital and received some devastating news.

Leukemia. Again. The third time in his young life, to be precise.

Wright wasn’t surprised by the diagnosis. He had been worried his cancer was back and went to the hospital alone to avoid worrying his mom and three younger siblings. Still, the news was paralyzing.

“I really felt like I was coming up in the world,” he said. “I thought I was done with cancer.”

Then the news got worse. Wright’s leukemia had become resistant to chemotherapy. A bone marrow transplant could cure his cancer, but he would have to be in remission first, and that couldn’t happen without chemotherapy. His chances of survival were dismal. Read full post »

The heart that connects Rachel Cradduck to a family in Mexico was transplanted into her son Ethan Robbins at Seattle Children’s Hospital when he was just five months old. It came from a baby who died in a California hospital after her family traveled there for medical care.

“A heart transplant is a bittersweet thing,” says Rachel. “During Ethan’s transplant and every day since, I have been deeply aware that another family suffered a tragic loss. I wanted to thank them for the incredible thing they did.”

Rachel had her chance last fall – about a year and a half after Ethan’s transplant – through a unique video teleconference arranged by Seattle Children’s Heart Center and Telemedicine teams at Children’s, and on the other end by Sierra Donor Services (SDS), the Sacramento-based organ procurement organization that helped facilitate the transplant. Read full post »

Chrissy Ehlinger had a very normal pregnancy, so when her son Carter was born she had no concerns about his health. He was beautiful and perfect and looked like any healthy baby should. It wasn’t until a simple, inexpensive and non-invasive newborn screening test called pulse oximetry screening revealed the unthinkable.

Pulse oximetry testing is not required in every state, even though it is recommended by the United States Department of Health and Human Services, the American Heart Association, the American College of Cardiology, and the American Academy of Pediatrics.

Fortunately for Chrissy, the hospital where baby Carter was born elected to do pulse oximetry testing on newborns. Here, Chrissy recounts how that decision saved her little boy’s life. Read full post »

Nicky, right, before he went to his prom this year.

Over the past two years, 17-year-old Nicky Richens’ life has transformed. He has found independence and a sense of freedom that he has never before known thanks to a small, discrete device called a phrenic nerve stimulator.

Nicky was born with congenital central hypoventilation syndrome (CCHS), a rare disorder that affects the autonomic nervous system and causes kids to essentially forget to breathe. Those that have this condition require 24-hour ventilatory support. The phrenic nerve stimulator, or pacer, can be concealed underneath clothes, provides up to 16 hours/day of breathing support and allows patients to be fully mobile.

“Pacers enable kids to get the health benefits of constant, proper oxygenation and ventilation without looking different or being restricted by it, which is huge in the life of a child,” said Maida Chen, MD, director of Seattle Children’s Hospital’s Pediatric Sleep Disorders Center. “With pacers, kids go on to have very meaningful lives because they are healthier, they feel better and they are free to participate in their life.”

Read full post »

Jessica Schend, now 17, was born with a cleft lip and palate. She has been treated at the Seattle Children’s Craniofacial Center her entire life.

In 2014, the Seattle Children’s Research Institute will implement life-saving projects, begin new studies to keep children safe and continue searching for ways to prevent and cure diseases that threaten some of our youngest patients. We are celebrating the New Year by highlighting some of the work that has researchers excited about 2014.

Cleft lip is one of the most common facial malformations in the world, affecting one in 700 children. Still, few researchers focus on this condition. But craniofacial scientist Timothy Cox, PhD, is leading efforts at Seattle Children’s Research Institute to determine how cleft lip might be prevented in the future.
Read full post »

In 2014, the Seattle Children’s Research Institute will implement life-saving projects, begin new studies to keep children safe and continue searching for ways to prevent and cure diseases that threaten some of our youngest patients. We are celebrating the New Year by highlighting some of the work that has researchers excited about 2014.

Looking forward to saving lives

Evelyn Tomlin was born April 16, 2013. Doctors in Oregon did not know that she had SCID until she was 3 months old.

On Jan. 1, years of work by Children’s research and clinical staff came to fruition when a test for severe combined immunodeficiency (SCID) was added to Washington’s newborn screening panel for all babies born in our state. Known as the “bubble boy” disease, SCID is a group of inherited disorders that cause severe abnormalities of the immune system. Babies with this disease often show no symptoms at birth, but after a few months they are unable to fight infections. Common illnesses, such as the flu or an ear infection, can be life-threatening for a child with SCID.

“Babies with SCID benefit from their mom’s immune system at birth, but once that goes away they have very little ability to defend themselves,” said Troy Torgerson, MD, director of Children’s Immunology Diagnostic Lab.

If caught early, more than 90 percent of SCID cases can be cured with a bone marrow transplant or gene therapy. But once a baby contracts an infection, survival rates drop to 50 to 60 percent.

Read full post »

At age 4, Natalie Merlo was diagnosed with a facial condition that left her feeling self-conscious and very different from other people.  While growing up, she even avoided having her photo taken.  Through the work with her care team at Seattle Children’s Craniofacial Center, Natalie has gained confidence, has happily accepted who she is and has a powerful message for others – “it’s OK to be different.”

Natalie, now 18 years old, recently entered college with a new facial structure and a new outlook on life after completing two major surgeries. For most of her life, Natalie lived with a severe under bite and deep, wide-set eyes and cheek bones, as a result of a genetic condition called Crouzon Syndrome. While her features were typically brushed off by strangers, it still affected the way she thought about herself.

“These differences were things other people glazed over, and didn’t really notice at first glance,” said Natalie. “But to me, they were so unfortunately obvious. I wish I could say that I didn’t let these things phase me, but that was far from the truth.”

Read full post »

Courtesy Jordan.Nicholson.Photography.

AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore.

“The luckiest or unluckiest boy”

Before he became ill, AJ’s mom Yoo-Lee Yea said he was an especially social first-grader and a frequent jokester. But on the morning of Nov. 12 he was quieter than usual. Later that day AJ threw up at school and by the evening he had a high fever. AJ’s primary care doctor said he likely had a virus and should feel better in a few days. Read full post »

The faster medical research moves the more quickly cures can be found for countless children’s diseases. But one of the greatest delays researchers face when trying to solve medical problems is finding enough patients to study.

“Enrolling patients in a clinical trial to study a rare condition could take years,” said Mark Del Beccaro, MD, a researcher and vice president of medical affairs at Seattle Children’s.

But now a federally funded non-profit has awarded Children’s and seven other pediatric hospitals funding to create a national network of patient data with the goal of speeding up medical research and improving patient care. Read full post »