Patient Stories

All Articles in the Category ‘Patient Stories’

Six Things to Expect in the Neonatal Intensive Care Unit (NICU)

Every new mom hopes to have a healthy baby who enters the world right on time. But unfortunately, deliveries don’t always go as planned, and some babies arrive too soon. Preterm birth, which according to the CDC occurs when an infant is born before 37 weeks of pregnancy, affects about one out of every 10 infants born in the U.S. each year. Approximately 50,000 of those infants are born very premature, at less than 28 weeks of gestation.

Sarly Dickinson knew there was a chance her little boy may come early due to complications she experienced during pregnancy, but she held out hope that he would make it to term. Unfortunately, David entered the world at just 25 weeks. Requiring surgical intervention for hydrocephalus, a condition where fluid builds up in the brain, he was transferred to Seattle Children’s Level IV Neonatal Intensive Care Unit (NICU) where he received care for three months. While Dickinson said 25 weeks was much too early, she was thankful David’s birth story wasn’t any scarier.

“My water broke at just 23 weeks and I was terrified because I understood the risks of having a baby that early, including the terrible reality that we may be faced with having to let him go,” Dickinson said. “I immediately went on bed rest and luckily he held out a little longer and arrived two weeks later, weighing a tiny 1 pound, 7 ounces.” Read full post »

Volunteer Gives Back to a Place He Calls Home

Pinwheels for PreventionEvery Tuesday and Friday, like clockwork, you’ll find volunteer Kien Luu at Seattle Children’s – either greeting visitors in the volunteer office with a warm, friendly smile, or making children laugh and play in the outpatient sibling playroom, helping them to forget for a moment where they are. But what many may not know is that Luu has a special connection to not only the hospital, but also the patients and families because he used to be a patient himself.

It’s from that experience that he chooses to give back to the place that he is most thankful for; for the place that saved his life thirty two years ago.

“My life is a blessing,” Luu, 38, said as he reflected on his time at Seattle Children’s. Read full post »

Princess Alexis Slays Dragon, Fulfills Wish to Help Other Kids With Cancer

Like many kids, 6-year-old Alexis has big dreams. But while some kids dream about defying gravity as an astronaut, or being the star ballerina in the Nutcracker, Alexis dreams of helping other kids like her and raising awareness of pediatric cancer by sharing her story. And for Alexis, there is no better way to reach other kids than with a cartoon that illustrates her journey.

Thanks to Make-A-Wish Alaska and Washington, this past weekend her dream came true. Alexis received the red carpet treatment at the world premiere of her very own cartoon at Cinerama in downtown Seattle. She was the star of the night as her friends, family and many others gathered to watch Princess Alexis slay the mighty dragon, a ferocious symbol that represented her fight with leukemia.

“It was incredible to see her wish come true and we’re just so grateful,” said Alexis’ mom, Angela. “Alexis was all smiles the entire night and felt like a real star who was making a difference. We’ve always known her to be a very brave little girl and now others who don’t know her can see it too.” Read full post »

Transgender Youth Navigating Healthcare: One Family Offers Perspective As Seattle Children’s Researchers Seek Survey Participants

Tai Jordan, right, and his mother Carmen Jordan offer tips for how the healthcare system can accommodate transgender youth.

A clinician stepping out and calling a name into a lobby full of waiting patients may seem like no big deal, but for a transgender youth patient waiting for an appointment, it can cut like a knife.

“When a clinician walks into a room, the birth name on your chart is the first thing they call out,” explained Tai Jordan, a 17-year-old transgender youth. Tai, whose birth name is ‘Tairah,’ was born female, but identifies as male. “If you’re not out yet, or you pass as the gender you identify with and use a different name, the clinician has inadvertently outed you in a public space where you should feel safe.”

Seattle Children’s researchers Dr. David Breland and Dr. Yolanda Evans want to better understand the issues that transgender patients and their families face in healthcare. They have launched a survey for parents of transgender youth patients with the goal of better understanding healthcare experiences and barriers. Families who are interested in participating in this research study can send an email by clicking here or call 206-884-1433 to learn more. The survey takes about 15 minutes to complete and each participant receives a $10 gift card. Read full post »

How 10 Days at Seattle Children’s Changed My Life

When I was 16, I spent 10 days at Seattle Children’s in the Inpatient Psychiatric Unit (now called the Psychiatry and Behavioral Medicine Unit, or PBMU).

I fought it. I hated it. I couldn’t get out of there fast enough.

Looking back three years later, I can tell you that those were the most important 10 days of my life. If not for my time at Seattle Children’s, I’d probably be in jail now, or dead.

Everyone on the unit met my resistance with compassion – and somehow, they got through to me. Even though I fought being in their care, they cared for me. They cared about me.

I left Seattle Children’s with medications that helped me and coping skills I still use today. Read full post »

Healing Through Art

Art therapist Rosalie Frankel with 11-year-old patient Jaylin Israel-Tompson

Art therapist Rosalie Frankel with 11-year-old patient Jaylin Israel-Tompson after completing an art therapy session

Twelve-year-old Selphie Luann Enderle has been in and out of Seattle Children’s Hospital since she was 3 years old for treatment of cystic fibrosis. While the long hospital stays can be difficult, there is one activity that she always looks forward to – her art therapy sessions. The joy these sessions bring her is evident by her reaction to the sight of art therapist Helena Hillinga Haas approaching her hospital room with a colorful cart in tow, overflowing with markers, crayons and construction paper.

“You’re here!” she exclaims as she jumps out of bed, throwing her hands in the air and running to the door. “I’ve been waiting.”

Selphie is one the many patients at Seattle Children’s who benefit from the unique therapy that compliments traditional medicine by providing patients with a creative outlet to express themselves, process emotions and reconnect to the playfulness of childhood. As art therapists, Hillinga Haas and Rosalie Frankel are trained to develop patient’s art skills while also focusing on their emotional needs.

“We work to address the mind-body connection and aid in the healing process by helping our patients relax and express their emotions in an enjoyable way,” said Frankel, who began the art therapy program at Seattle Children’s 15 years ago. “Our goal is always to help our patients find moments of comfort by providing them with this cathartic outlet that also often serves as a welcomed distraction.” Read full post »

Patient Shares Food Allergy Study Experience to Highlight New Web Hub For Seattle Children’s Research Studies and Clinical Trials


Isabelle Thomelin hopes that by participating in a clinical research study for her severe peanut and tree nut allergies, she can help researchers find effective therapies.

Families, patients and providers can now browse our clinical research studies at the newly-launched Seattle Children’s Research Studies and Clinical Trials Web Hub.

When a family is in a rush to get dinner on the table, maybe mom or dad will order pizza, grab healthy greens from the salad bar or hustle home with prepared food from the deli. But when the Thomelin family is considering dinner, they have to think about every single ingredient they bring into the kitchen. Their youngest daughter, 9-year-old Isabelle Thomelin, has severe allergies to peanuts and tree nuts.

Isabelle is enrolled in a clinical study at Seattle Children’s that may reduce her allergic reactions. The study will test an immunotherapy technique and a designer medicine to see if they allow Isabelle’s body to safely tolerate peanuts and tree nuts in gradually increased doses. Read full post »

Patients Who Benefited From Life-Saving Heart and Lung Machine Celebrate With Reunion

Jude Xenakis, 10 months, came to Seattle Children's for ECMO when he was born with severe meconium aspiration.

Jude Xenakis, 10 months, with parents Eden and Michael Xenakis and sister Clementine. Jude came to Seattle Children’s for ECMO when he was born with severe meconium aspiration.

This summer, Seattle Children’s hosted a reunion for patients who have one unique experience in common: Extracorporeal Membrane Oxygenation (ECMO) played in key role in saving their lives. Patients, families, doctors and nurses gathered to celebrate the 25th anniversary of Seattle Children’s use of ECMO, an advanced life-support therapy that can replace heart and lung function when these organs fail or need to rest. ECMO is used for a range of life-threatening medical conditions and complications, and Seattle Children’s has been named a Center of Excellence by the Extracorporeal Life Support Organization because of its expertise with technologies such as ECMO.

“Seeing all the kids that ECMO helped save means the world to our doctors and nurses,” said Dr. Michael McMullan, Seattle Children’s Director of Mechanical Cardiac Support and Extracorporeal Life Support (ECLS).

Over the past 25 years, Seattle Children’s ECLS program has touched the lives of more than 700 families. Here we share the stories of a few of these patients – from a cheeky baby to a recent law school graduate – who came together to share their experiences and celebrate where they are today. Read full post »

NIH funds $490,000 for Muscular Dystrophy Research in Zebrafish; Family Hopes for Cure

Nick Olson, 7, comes to Seattle Children's for Duchenne muscular dystrophy treatment.

Nick Olson, 7, comes to Seattle Children’s for Duchenne muscular dystrophy treatment.

Tiny, sleek zebrafish could hold the key for how we treat muscular dystrophy in the future. Dr. Lisa Maves, a researcher at Seattle Children’s Research Institute, has received a grant from the National Institutes of Health to study drug combinations in zebrafish for Duchenne muscular dystrophy. It’s one of the most common forms of muscular dystrophy and affects males almost exclusively. The condition, caused by a genetic disorder of the X chromosome, gradually weakens the body’s muscles and occurs in about 1 out of every 3,500 boys.

Nick Olson is 7 years old—a redhead with a toothy smile and a stuffed animal named Puppyroni by his side. Nick has Duchenne muscular dystrophy. What does a little boy like Nick have in common with a zebrafish swimming in a tank? Genes. Zebrafish are perfect subjects for muscular dystrophy research because the same genes that caused muscular dystrophy in Nick cause it in zebrafish, too. Read full post »

New South Clinic Opening Offers Child with Cerebral Palsy a Second Chance

Omari Henry - Web

Omari Henry, 7, at Seattle Children’s South Clinic.

Cynthia Gordon was just 25 weeks into her pregnancy with her son, Omari Henry, when she fell to the floor of her home, seizing uncontrollably. She was rushed to the hospital and Omari was born a short time later.

Thankfully, both mom and baby made it through the delivery, but not without some complications. Omari suffered brain hemorrhaging from the stress of the birth, and he was diagnosed with cerebral palsy.

When Omari was 3 years old, Gordon found Seattle Children’s Federal Way Clinic, which offered occupational therapy and physical therapy. There, Omari made huge strides, but eventually, he needed services the clinic couldn’t provide anymore. Read full post »