Patient Care

You may remember Kat Tiscornia from September of last year when she shared her experience of battling Ewing sarcoma and becoming “Titanium Girl.” Kat, now a sophomore at Mercer Island High School, asked On the Pulse if she could share an important message with those who cared for her at Seattle Children’s. We think you’ll enjoy reading it as much as we did.

Thank you. It’s just two simple words. In some languages it’s just one, gracias or merci for example. I was brought up to say thank you all the time. Thank you to my teachers, my coaches, my bus driver and the store clerk behind the counter. Are these two words really enough though? What if it’s a big thank you? What if the people you want to thank are the reason you are standing here today?

In March 2013 I was diagnosed with Ewing sarcoma, a rare form of bone cancer. I was at Seattle Children’s Hospital when I first met my oncologist, Dr. Doug Hawkins. I will never forget that day. He had to deliver the worst news of my life. However, as he told me that I had a cancerous tumor in my leg, his voice was full of compassion, patience and honesty. He was honest about how hard this journey I was about to embark on was going to be. I remember being very scared that day, but I never felt hopeless. He had a plan for me and I trusted him. Thank you, Dr. Hawkins. Read full post »

Dr. Katie Williams, a pediatrician and urgent care specialist at Seattle Children’s Bellevue Clinic and Surgery Center, lived every parent’s worst nightmare when her 1-month-old son turned gravely ill one Saturday evening in January. Here, Williams shares how her infant escaped the grip of death — and how she gained a new level of gratitude — thanks to her colleagues’ expertise in pediatric life support.

Dr. Katie Williams with her son, Grayson

The Saturday that is forever burned in my memory started out typically. My husband David DeTerra and I took our three kids — 4-year-old Evan and 1-month-old twins Elisabeth and Grayson — to an afternoon birthday party for a friend. On the way home, we stopped for takeout and looked forward to a relaxing evening at home. I remember sitting in the car thinking how glad I was that the twins had reached the 30-day mark, because that’s the point where infants are less likely to get serious infections.

What happened next came totally out of the blue.

Grayson started breathing funny and he had this strange rhythmic cry. I figured he was hungry and wanted out of his car seat to nurse. When we got home, David noticed he felt cool and clammy and his face looked pale. We both tried to feed him, but he wouldn’t eat. His eyes, normally so alert, couldn’t connect with us at all. When his tiny body went limp, we frantically called 9-1-1. Read full post »

In January, Seattle Children’s brought on Ryan Garcia to serve as the hospital’s first chef focused exclusively on patient meals. With more than 25 years of experience in the food service industry, Garcia’s goal is to change the perception of hospital food by working with patients and their families to create natural, healthy dishes based on familiar, home-cooked meals. He also plans to focus on using organic, locally-sourced foods that come from the hospital’s organic garden and broader community.

“The meals we create are about so much more than the recipe — it’s about making food part of the patients’ overall healing experience,” Garcia said. “If our patients are happy and enjoying what they eat, that’s also one less thing parents have to worry about.” Read full post »

Children with autism often experience communication challenges. It’s crucial for patients to receive treatment interventions during early development to prevent long-term deficits, but it’s often difficult for them to access the specialists they need.

As a clinical psychologist in Seattle Children’s Autism Center, Dr. Mendy Minjarez knows how high the demand is for therapists who can address core autism features, such as language deficits.

“Even if patients are lucky enough to see a behavior intervention specialist, their treatment is limited to the appointment time,” Minjarez said. “For years, parents would say to me ‘I wish I could practice with my child at home.’”

Minjarez made that wish a reality in 2007 by developing a new way to offer Pivotal Response Training (PRT), which focuses on teaching parents to improve their child’s language skills by using common motivations in daily life. PRT had previously been taught during individual therapy sessions with a clinician, the parent and the child, but Minjarez’s model aims to serve many more families by teaching parents in a group setting.

Now, Minjarez has collaborated with Lucile Packard Children’s Hospital Stanford researchers to publish a study testing the group model of PRT.  She discovered most parents effectively used the training and their children showed significantly more language progress than those who did not attend the group training. Read full post »

Ada Zeitz, 2, tries to have some fun at her Kidney Stones Clinic visit while her mom and dad meet with the multidisciplinary team.

When you hear the term, “kidney stones,” you probably wouldn’t think a blue-eyed, blond-haired 2-year-old is someone who suffers from the painful condition. After all, kidney stones are most common in adults age 40 and older.

Yet over the past decade, prevalence of kidney stones in kids has increased, says Dr. Joel Hernandez, nephrologist at Seattle Children’s Hospital.

It’s this increase that prompted creation of a new clinic at Seattle Children’s – one that exists solely to diagnose and treat kids with kidney stones. Read full post »

Erik Twede was just 3 years old when he was diagnosed with Duchenne muscular dystrophy, a fatal genetic disorder that causes progressive muscle weakness.

The day doctors told Karen Twede her son Erik had Duchenne muscular dystrophy, she went straight home and searched for the mysterious illness in her medical dictionary. She read: “A progressive muscle disease in which there is gradual weakening and wasting of the muscles. There is no cure.”

“My breath caught in my throat,” Twede said. “It was a terrifying reality to accept.”

Thankfully, several clinical research studies being offered at Seattle Children’s Research Institute are giving hope to parents facing the same devastating diagnosis.

The studies, led by Dr. Susan Apkon, director, Seattle Children’s Department of Rehabilitation Medicine and an investigator in the research institute’s Center for Clinical and Translational Research, offer promise to better treat, or even cure, Duchenne, through the use of new therapies with fewer side effects.

“When I meet with patients with Duchenne and their families today, we have a very different conversation than we might have had 10 years ago,” Apkon said. “Today I ask my patients ‘What do you want to be when you grow up?’ because I believe in their future. I’ve been able to look ahead and see the research being done nationally and internationally and there seem to be treatments on the horizon.” Read full post »

More than 30 million Americans have eczema, a skin condition that causes dry, red, extremely itchy skin. Eczema in children often starts before the age of 5 and can negatively impact children in many ways, including not being able to sleep and lacking focus in school or social situations because of frequent scratching.

I see many patients every week who suffer from eczema and other skin conditions. These patients and their parents often come to clinic with ideas about what causes these skin conditions and how to treat them. Below, I’ve debunked three common myths about eczema that we hear at Seattle Children’s Hospital on a regular basis. Read full post »

The following is part 2 of our two-part series on ECPR, a combination of CPR and ECMO offered at Seattle Children’s Hospital to save the most fragile patients’ lives. Part 1 covered Hannah Mae Campbell’s incredible story where ECPR and a heart transplant saved her life and allowed her to be the thriving toddler she is today. Here, we discuss how Seattle Children’s has spearheaded a first-of-its-kind ECPR simulation program to improve the process that allows the hospital to save patients in a time of crisis.

In an ECPR simulation in Seattle Children’s neonatal intensive care unit, the surgeon works to get the mannequin on the ECMO pump.

ECPR takes place when a patient goes into cardiac arrest, does not respond to CPR and is then put on Extracorporeal Membrane Oxygenation (ECMO), a machine that functions for the heart and lungs when the organs fail or need to rest. Hannah Mae Campbell’s experience demonstrates the importance of technology like ECMO and why it’s important to continually improve complex, life-saving processes like ECPR.

Since January of this year, Seattle Children’s has executed the largest-scale ECPR simulations in the nation, with medical staff coming together bimonthly to practice as though they were in a real ECPR situation. Even though Seattle Children’s ECPR outcomes are higher than the national average, the hospital initiated the simulations with the goal of standardizing each step of the process to further improve outcomes for patients. Read full post »

The following is part 1 of a two-part series on ECPR, a combination of CPR and ECMO offered at Seattle Children’s Hospital to save the most fragile patients’ lives. Here, we tell Hannah Mae Campbell’s story and how ECPR saved her life. In part 2, we’ll discuss how Seattle Children’s has spearheaded a first-of-its-kind ECPR simulation program this year to improve the process that allows the hospital to save patients in a time of crisis.

Today, Sept. 24, marks a remarkable milestone for the Campbell family – the end of a long, tumultuous journey that began the day their daughter, Hannah Mae Campbell, was born. It’s the anniversary of the day Hannah received a new heart, and a chance at life two years ago.

Hannah’s journey begins

When Jennifer Campbell of Everett, Wash., was pregnant with Hannah she prepared as much as she could and followed all the prenatal guidelines to a tee. This was her first baby and she, as all parents do, wanted her little girl to be perfect.

Once Hannah was born on May 18, 2012, Jennifer and her husband Jon remember how the joy of seeing their little girl for the first time quickly turned into terror. Hannah was lethargic, her hands and feet were blue and her heart was rapidly pumping at 253 beats per minute. The room at the local birthing center quickly filled with doctors and then Hannah was taken to the neonatal intensive care unit (NICU). Twelve hours later, Hannah was transferred by ambulance to Seattle Children’s Hospital.

Read full post »

Shannon Keating, 16, before cancer diagnosis.

Shannon Keating always imagined that she would be a mom some day, but she didn’t expect she’d be treated at a fertility clinic at age 17. Shannon was diagnosed with Hodgkin Lymphoma as a high school sophomore, was successfully treated and then relapsed nine months later. As she prepared to fight for her life a second time, experts at Seattle Children’s Hospital helped her preserve her dream of being a parent one day.

A devastating diagnosis

Shannon was first diagnosed with Hodgkin Lymphoma in March 2013, after she discovered a lump on her neck. The treatment was six months of less-aggressive chemotherapy that oncologists did not believe would affect her fertility.

“I was relived that this therapy was less toxic, but when it was finished I didn’t feel like I was done,” Shannon said. “I had this feeling hanging over my head. I believed my cancer would come back.”

Unfortunately, Shannon was right. That December, her cancer relapsed. Facing a life-threatening illness once again, she learned her second round of treatment would be more aggressive and could cause infertility. Doctors offered her the opportunity to freeze her eggs so that she might later become pregnant using in-vitro fertilization, but Shannon was initially overwhelmed. Read full post »