Patient Stories

All Articles in the Category ‘Patient Stories’

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 »

Seattle Children’s Leads Nation in Heart Transplant Survival Rates

Julie Kobayashi, 12, traveled from Hawaii to Seattle Children’s for her heart transplant.

Julie Kobayashi, 12, traveled from Hawaii to Seattle Children’s for her heart transplant.

Children who need a heart transplant face a frightening waiting game before a donor heart becomes available. They must live with a failing heart for months, or even years, as clinicians strive to keep them healthy enough for transplant. Nationally, these patients face the highest waiting list mortality in solid-organ transplantation medicine, with 17% of children dying while waiting for a heart transplant.

Thankfully, Seattle Children’s has one of the best waitlist mortality rates among pediatric heart transplant centers, as reported to the United Network of Organ Sharing. The hospital also treats some of the region’s most complex, advanced heart disease and heart transplant cases and has one of the highest 3-year patient survival rates in the country.

“We are proud to be ranked among the best pediatric heart transplant centers in the country,” said Dr. Yuk Law, medical director of the Cardiac Transplant/Heart Failure Service at Seattle Children’s. “We have created a team of skilled experts who have dedicated their careers to treating heart failure and transplant cases.” Read full post »

Starting Out Strong

Chief of cardiology Dr. Mark Lewin leads the Prenatal Diagnosis and Treatment team at Seattle Children’s. He specializes in fetal diagnosis and the ongoing care of children with congenital heart defects.

Chief of cardiology Dr. Mark Lewin leads the Prenatal Diagnosis and Treatment team at Seattle Children’s. He specializes in fetal diagnosis and the ongoing care of children with congenital heart defects.

When pregnant couples discover problems with their babies, Seattle Children’s Prenatal Diagnosis and Treatment Program helps them make some of the toughest decisions they’ll ever face.

When an ultrasound revealed a problem with her baby’s heart, Melinda Deitz – then five months pregnant – was referred to Seattle Children’s for a fetal echocardiogram – a test to pinpoint what was wrong.

Deitz could feel the baby moving in her belly as she and her husband, Rich, waited for the results. They hoped everything was OK or that the problem was easy to fix. But when they saw the look on Dr. Mark Lewin’s face they knew it was serious. Read full post »

Conjoined Twin Treated at Seattle Children’s Says ‘Thank You’ to Russell Wilson

Like many Seattle natives, 22-year-old Kevin Mick is a passionate Seahawks fan. Despite now living in Alma, Ark., Mick said the Hawks will always be his team, not just for their athletic talents, but for their actions off the field as well.

“The fact that Russell Wilson takes the time to visit patients every week at Seattle Children’s is amazing,” Mick said. “I know first-hand how much these special visits mean to a sick child.”

Growing up at Seattle Children’s

Kevin Mick grew up in Seattle as a dedicated Seahawks fan. Today, he says "Thank you" to Russell Wilson for supporting patients at Seattle Children's.

Kevin Mick grew up in Seattle as a dedicated Seahawks fan. Today, he says “Thank you” to Russell Wilson for supporting patients at Seattle Children’s.

Mick was a patient at Seattle Children’s for the first 12 years of his life after being born a conjoined twin.

In June of 1992, Mick’s parents, Rex and Debra, were living in Kirkland and found out Debra was pregnant. At a seven-week ultrasound, the parents learned they were having twins after doctors heard two heartbeats. Two months later, they learned their two sons were conjoined at their abdomens. Read full post »

Seattle Children’s Wishes the Seahawks Good Luck, Raises 12th Man Flag

Patients, families and staff gathered together at the hospital main campus today to raise the 12th Man flag and cheer on the Seattle Seahawks.

Patients, families and staff gathered together at the hospital main campus today to raise the 12th Man flag and cheer on the Seattle Seahawks.

Seattle Children’s has received incredible support from the Seattle Seahawks. Not only does quarterback Russell Wilson make weekly visits to our patients and families, but many other Seahawk players, the Sea Gals and even the Seahawks’ mascot Blitz have spread joy throughout the hospital!

To celebrate the Seahawks’ return to the Super Bowl, Seattle Children’s patients, families and hospital staff showed their Seahawks pride today by coming together in their brightest and bluest attire and raising the 12th Man Flag outside the hospital’s main campus.

“We got to meet Russell and many of the other Seahawks over Christmas,” said Katie O’Day. Her 7-year-old daughter Kennedy is currently receiving cancer treatment at Seattle Children’s and helped raise the 12th Man flag today. “One player even hung out and played video games with her for a half hour! It’s was so amazing that they took the time to brighten up her day. It made coming in for chemotherapy much easier!” Read full post »