Patient Stories

All Articles in the Category ‘Patient Stories’

Genetics Research Improves Diagnosis, Treatment of Rare Metabolic Diseases Around the World

Dr. Sihoun Hahn led a collaborative research study which helped a 10-year-old girl walk for the first time in her life.

Dr. Sihoun Hahn led a collaborative research study which helped a 10-year-old girl walk for the first time in her life.

A collaborative research study led by Dr. Sihoun Hahn, director of the Biochemical Genetics program at Seattle Children’s and an investigator within Seattle Children Research Institute’s Center for Developmental Therapeutics, has changed the lives of children around the world and helped a 10-year-old girl walk for the first time.

Research answers a parent’s prayer

Bokyung Kim, a 10-year-old living in Korea, spent most of her life confined to a wheelchair. Doctors suspected that she suffered from muscular dystrophy, but were unable to diagnose her condition. Bokyung’s parents prayed that their daughter would walk one day. So when they had the opportunity to enroll Bokyung in a collaborative research study between Seattle Children’s Research Institute, University of Washington School of Medicine and Seoul National University College of Medicine in Korea, her parents were eager to participate.

“This family never lost hope for their child,” Hahn said. “And neither did we.” Read full post »

Music Therapy: Treating the Souls and Spirits of Patients

David Knott and Betsy Hartman may not wear a white coat or operate a stethoscope, but for patients at Seattle Children’s, they offer a unique kind of medicine in the form of music. Both board-certified music therapists, Knott and Hartman pair their musical talents with their passion to help heal patients at Seattle Children’s Hospital through music therapy.

Music therapy is the use of music to achieve non-musical goals, such as reducing the perception of pain, providing opportunities for non-verbal expression and facilitating rehabilitation and relaxation. Knott and Hartman use singing, listening to music and playing instruments to help treat patients of all ages spanning a variety of health issues. Read full post »

NASCAR Driver Kasey Kahne Surprises Kids at Seattle Children’s, Supports Strong Against Cancer

Nicolas Tobias - Web

Kasey Kahne today took some time away from the race track to visit patients at Seattle Children’s Hospital. The NASCAR Sprint Cup Series driver, and Enumclaw, Wash., native made a surprise visit to the hospital after announcing that he’ll be teaming up with Seattle Seahawks quarterback Russell Wilson to help put an end to childhood cancer by choosing Strong Against Cancer as this year’s beneficiary of their fundraising event, The DRIVE.

With toys in hand, he brought much needed smiles and brightened the day for patients and families. The hospital was revving with excitement as Kahne met with kids and teens in a race of their own – a race to feel better and get back to life outside the hospital walls. Read full post »

Captain America Joins Friend Chris Pratt to Surprise Kids at Seattle Children’s

Marvel superhero Chris Evans (Captain America) and friend Chris Pratt (Star-Lord) today made good on a friendly bet that started between the two on Twitter in January after the National Football League playoffs.

The hospital was abuzz as Evans and Pratt brought joy to patients and families at Seattle Children’s. Much like their superhero alter egos, they saved the day in the eyes of the children and teens at the hospital. Read full post »

New Clinic Offers Families the Chance to Challenge Food Allergies

Colin Wenrick, 6, had a frightening allergic reaction to a granola bar when he was just 2 years old. Even after an allergy skin test, his mom was not sure which foods he was truly allergic to.

Colin Wenrick, 6, had a frightening allergic reaction to a granola bar when he was just 2 years old. Even after an allergy skin test, his mom was not sure which foods he was truly allergic to.

Jennifer Wenrick’s son Colin, 6, had a frightening allergic reaction to a granola bar when he was just 2 years old. After consuming the snack, he immediately broke out with hives and began vomiting.

“It was terrifying,” Wenrick said. “I knew something was seriously wrong right away and rushed him to the doctor.”

Soon after, Colin was screened for food allergies and tested positive for peanut, tree nut and sesame seed allergies. For the next three years, Wenrick vigilantly kept her son away from these foods.

“It was a life-changing experience,” Wenrick said. “Food allergies permeate every aspect of your life, from traveling to preschool to Halloween candy. Every time he ate I could feel myself tensing in fear.”

But recently, Wenrick learned Colin could safely enjoy peanut products after he participated in a food allergy challenge at Seattle Children’s Food Allergy Challenge Clinic, part of the Seattle Food Allergy Consortium. Read full post »

VADs 101: Lifesaving Heart Devices

The language of medicine is full of complicated words and acronyms. For parents of children with serious heart conditions like congenital heart disease or pulmonary hypertension, one such acronymn that may incite fear or worry is hearing that their child may need a device called a VAD (Ventricular Assist Device). However, these devices, combined with Seattle Children’s Heart Center’s medical expertise, save the lives of many children and teens each year.

What is a VAD?

A ventricular assist device (VAD) is a mechanical pump a surgeon implants inside or outside a child’s chest and connects to the heart during open-heart surgery. A VAD can be used for patients waiting for a heart transplant or for patients whose heart muscle needs to rest. Seattle Children’s has a variety of VAD options for patients large and small, from tiny babies to young adults, which aren’t available at every hospital. VAD options at Seattle Children’s include the Berlin Heart, CentriMag and PediMag centrifugal pumps, HeartMate II, Heartware HVAD and SynCardia Total Artificial Heart (TAH).

The newer, fully implantable VADs like the HeartMate II, Heartware HVAD or TAH can also greatly enhance the quality of life for many patients who are awaiting a heart transplant, often allowing them to leave the hospital. For one such patient from Hawaii named Julie Kobayashi, her implantable VAD even allowed her to leave the hospital while she waited for a heart and achieve her dream of playing in the snow for the first time.

To learn about each type of VAD, watch the video above as cardiac surgeons Dr. Jonathan Chen and Dr. Michael McMullan explain the many types that Seattle Children’s offers, and why it’s important to choose the device that best matches a child’s needs.

Read full post »

Study Aims to Increase the Life of Organs After Transplant, Uses High-Tech Pill Box

Jack sits with his uncle who donated his kidney to him.

Jack sits with his uncle (right) who donated his kidney to him.

It can be hard enough to remember to take a multivitamin every day; imagine having to take 20 pills at specific times throughout the day, every day, for your whole life. That’s the reality individuals who have undergone an organ transplant must face. In order to stay healthy and to keep their bodies from rejecting their transplanted organ, a myriad of medications must be taken daily, including immunosuppressants. It can be a difficult pill to swallow, especially for teenagers.

According to research studies, adolescents have the worst outcomes after transplant out of any age group. Adolescents also have the highest rate of non-adherence, which means they either decide not to take their medication or just plain forget, which can lead to the rejection of the organ.

“You can imagine taking that many medications every day could get a little old. It’s a major burden to put on a teenager,” said Dr. Jodi Smith, medical director of kidney transplant at Seattle Children’s Hospital, and a researcher with the Center for Clinical and Translational Research (CCTR). “They were not meant to have this much stuff going on in their life. But if you don’t take your meds, you’ll eventfully need another kidney transplant, and once you lose one it’s harder to get another.” Read full post »

Study Predicts Which Children with Craniosynostosis Most Likely to Suffer From Learning Deficits

After Olivia Bush was diagnosed with single-suture craniosynostosis at just 3 months old, her parents did not know how the condition would affect her brain development over time. A new study led by Seattle Children's is addressing these concerns.

After Olivia Bush was diagnosed with single-suture craniosynostosis, her parents did not know how her brain would develop over time. A new study led by Seattle Children’s is addressing these concerns.

Seattle Children’s researchers have published the results of a 10-year, multi-site study tracking the cognitive development of children with single-suture craniosynostosis from infancy to school age. The results could help families and clinicians better predict which children with this condition are at greater risk of having learning deficits so that they might intervene early in the child’s life.

The study, published today by the American Academy of Pediatrics and titled “Intellectual and Academic Functioning of School-Age Children with Single-Suture Craniosynostosis,” reported children with single-suture craniosynostosis, on average, were more likely than children without the disorder to have learning deficits once they started school. However, despite this trend, a little over half of the children with single-suture craniosynostosis showed no discernible learning problems.

Living with the unknown

The research is significant for parents like Cindy and Todd Bush. Twelve years ago, Cindy and Todd learned their 3-month-old daughter, Olivia, had craniosynostosis, a condition in which one or more of the special joints in a baby’s skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby’s skull cannot grow properly. Craniosynostosis occurs in approximately one in 1700-2500 live births. Corrective surgery to restore the suture is preferentially performed in the first year of life. Read full post »

3-D Printed Heart Model Makes Complicated Surgeries Possible

Dr. Stephen Seslar prepares for a complicated surgery using a new, realistic heart model created with 3-D printing.

Dr. Stephen Seslar prepares for a complicated surgery using a new, realistic heart model created with 3-D printing.

Kami Sutton, 26, who you met last week, has been waiting for a heart transplant for five years. But surgeons at Seattle Children’s and University of Washington Medical Center (UWMC) are now preparing to perform a difficult surgery that could greatly improve her quality of life and may even eliminate her need for a transplant. It’s possible for the first time ever, thanks to a new, realistic heart model created with 3-D printing. Read full post »

Kami Shares her Congenital Heart Defect Journey, Reflects on Her “Home”

In honor of Congenital Heart Defect (CHD) Awareness Week, 26-year-old Kami Sutton wanted to share her journey that began at Seattle Children’s the day she was born.

26-year-old Kami Sutton

26-year-old Kami Sutton

Seattle Children’s is my home. From the previously trademark blue bubble letters, the giraffes (which were recently replaced in the remodel), trains and Mickey Mouse – it is home. It is full of the people who I have trusted with my life since before I can even remember.

I was transferred to Seattle Children’s from a local hospital on Sept. 21, 1988, at only four hours old after being delivered via emergency C-section. I was blue and unable to breathe on my own. My parents were told I most likely would not survive the 30 minute trip down I-5 to the hospital. Read full post »