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 »
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 »
Dr. Abby Rosenberg, medical leader of Seattle Children’s Adolescent and Young Adult Cancer Program
Sometimes I hesitate to tell people what I do for a living. This isn’t because I don’t love what I do (I do), but because the idea of kids with cancer seems to make people uncomfortable. Perhaps this is because they think of their own children and feel that urgent need to protect them, coupled with sudden gratitude that their own kids are healthy. Perhaps they think of the heartstring-pulling commercials featuring cute, bald children. Or, maybe they think of melodramatic movies where the patients with cancer always die. Perhaps they relive their own experiences involving older adults, friends or family members who suffered from cancer.
Regardless of their reasoning, the expectation seems to be that pediatric cancer must be sad. And sometimes, it is. But there’s also a lot of hope. So, in honor of Childhood Cancer Awareness Month, I thought I would take this opportunity to share what I think of kids with cancer below. Read full post »
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 »
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 »
CICU nurse Sherri Kruzner-Rowe with her former patient, Karissa Gossett.
When Seattle Children’s Family Advisory Council opened nominations for the 2015 Family Choice Awards, patients and families responded with more than 200 names – each one belonging to a staff or faculty member who made an indelible impression for all the right reasons.
With great difficulty, the advisory council whittled down the nominations to select four recipients who live and breathe a commitment to family-centered care: Danielle Giles, Sherri Kruzner-Rowe, Jo Ristow and Dr. Kendra Smith. In addition, the graduating residents selected one of their peers – Dr. Amanda Stinger – for the family-centered resident award.
Read on to learn more about the 2015 Family Choice Award winners and what family-centered care means to each of them. Read full post »
Aaden Adams with his parents, Cheree and Andrew Adams
Aaden Adams remembers waking up in his room in the Cardiac Intensive Care Unit (CICU) at Seattle Children’s Hospital and asking for red Popsicles.
“Everybody wanted me to talk and I wanted a red Popsicle,” said the precocious 6-year-old with a face full of freckles. “So I asked for Popsicles. Do you remember that, Mom?”
“Yes, we remember that well,” answered Aaden’s mom, Cheree Adams. “That was a good day. That was the day we knew that you were on the right path. We knew that you were coming back to us.”
Just two weeks prior, Aaden, who was born with a congenital heart defect, was so near death that his parents were preparing themselves for the reality that he might not make it out of the hospital. It was a situation they had not even considered.
“He came here for a pretty minor procedure,” said Andrew Adams, Aaden’s father. “He was supposed to be in and out of the operating room, but then his body just shut down. His heart wouldn’t restart.”
Dr. Erin Albers, Aaden’s attending cardiologist, said the complication was so unusual that no one on the care team had seen it before. Read full post »
The NEST Program provides hands-on, simulation-based training in neonatal intubation and resuscitation techniques for pediatric providers across the region.
All new parents hope for a healthy delivery, but in the rare instance that an unexpected medical issue arises as baby enters the world, it’s crucial that the newborn delivery and transport care teams are well versed in performing neonatal emergency procedures.
Breathing difficulties are some of the most frequent unexpected medical issues in newborns, especially in preemies. According to Seattle Children’s neonatologist, Dr. Taylor Sawyer, about 10% of all babies born in the U.S. will need breathing assistance in the delivery room, and about 1 in 1,000 will need to be intubated, or have a tube urgently inserted in their airway to push air into their lungs. Fortunately, these emergency situations are uncommon. However, this infrequency can leave many delivery providers and transport teams in the community, who only intubate a newborn about once a year, feeling out of practice and a bit uneasy when required to perform this complex task.
This is why Seattle Children’s and the University of Washington have launched the Neonatal Education and Simulation-based Training (NEST) Program, which offers hands-on, simulation-based training in neonatal intubation and resuscitation techniques for pediatricians, nurses and transport team members across the region. Read full post »
Juliette (right), who was too sick to nurse, was still able to get breast milk from her mom, Amanda, with the help of Seattle Children’s lactation consultants.
Everything went perfectly when Amanda Erickson’s first baby was born. Bennet arrived right on time on March 11, 2012, healthy and eager to nurse.
Exactly two years later – on March 11, 2014 – Bennet’s sister, Juliette, came into the world. This time, says Erickson, “it was an adventure birth.”
In other words, nothing went as planned.
Juliette had been diagnosed before birth with a serious heart problem, and Erickson planned to deliver at the University of Washington Medical Center so her baby could get to Seattle Children’s right away.
“We knew she wouldn’t be able to breathe on her own,” says Amanda. Read full post »
The Marvin family
Imagine living every day of your life waiting for your child to have their next seizure. This is often the reality for parents of children with intractable epilepsy – a chronic form of epilepsy that can’t be controlled by medications alone. Every moment is plagued by uncertainty, and the world quickly becomes a place filled with barriers where hope and opportunity used to be.
This scenario is something with which James Marvin and his wife Joana are all too familiar. When their daughter, Charlotte, was diagnosed with epilepsy after having her first seizure at just 14 months old, this became their family’s world.
“We called it ‘the antagonist,’” said Marvin. “Charlotte would usually have a seizure every couple of days, but any time she was stressed, tired or sick, the antagonist would come out. It was so difficult to live our lives just waiting for the other shoe to drop, and there was no end in sight.”
That was, until five years later when they traveled 3,000 miles from their home in Virginia, to seek treatment at Seattle Children’s Hospital that held the promise of ending Charlotte’s seizures, hopefully for good.
Read full post »