On the Pulse

The Ultimate Act of ‘Paying It Forward’: A Mom’s Lifesaving Mission

Kaden Hollis, now 11, received a lifesaving liver transplant when he was nearly 2 years old.

In honor of Donate Life Month, On the Pulse shares an inspiring story of a mother and her son that symbolizes the true act of ‘paying it forward’. Kaden Hollis was only 1 years old when he underwent a lifesaving liver transplant. Throughout Kaden’s journey, his mother Cindie knew that although the gift of life her son received could never be paid back, it could be paid forward — which is what she did when a friend was in desperate need.

Kaden Hollis was just 3 months old when his mother, Cindie Hollis, began noticing signs that indicated her baby was not well.

The whites of his eyes were turning yellow, which quickly spread throughout his entire body. He had a constant itch that resulted in awful cuts all over his delicate skin from the scratching. It was evident that Kaden had a severe case of jaundice. After numerous doctor visits and careful monitoring of his condition over the next several months, Kaden’s health was not improving. To find the answer to what was causing her son’s worrisome condition Hollis went to Seattle Children’s Hospital when he was 13 months old.

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Family Travels Across Country for Liver Transplant to Treat Rare Disease

Trevor as a baby

Trevor was born with rare disease called maple syrup urine disease. Seattle Childrens transplant program is one of six centers in the country to offer transplantation for children with MSUD.

Only a week after giving birth to twins, a girl and a boy, in July of 2008, Annette Cole’s world was turned upside down. Something was wrong with her baby boy, Trevor Clemons. In his first couple weeks of life he was lethargic, irritable and couldn’t keep any food down. She was overwhelmed with fear as doctors delivered the difficult news.

The diagnosis felt as unreal as the name of the disease sounded: maple syrup urine disease (MSUD).

“We couldn’t believe it,” said Cole. “When we first found out about the disease, we had never heard of it before. We didn’t know what to expect. We didn’t know anything.” Read full post »

Seattle Children’s Joins Largest Autism Research Study in U.S.

Dr. Raphael Bernier is helping launch a web-based registry with DNA analysis to accelerate autism research and speed discovery of treatments.

Dr. Raphael Bernier is helping launch a web-based registry with DNA analysis to accelerate autism research and speed discovery of treatments.

Researchers know that certain genes are linked to autism spectrum disorders — scientists have identified about 50 genes, and they estimate an additional 300 or more are also involved.

Pinpointing these genes is difficult, but it could be the key to understanding the cause of a disorder that affects 1 in every 68 children in the U.S., according to the Centers for Disease Control and Prevention. One child’s diagnosis of autism and the gene that contributed to it will likely be completely different than another child’s diagnosis and genetic influences. Now, a nationwide study will create the largest bank of autism genes in the country that researchers can contribute to and use in research.

Seattle Children’s Autism Center is helping launch the web-based registry with DNA analysis to accelerate autism research and speed discovery of treatments. The SPARK study, sponsored by the Simons Foundation Autism Research Initiative, encompasses 21 leading national research institutions doing autism research.

“When we work to identify genes that cause autism, we need a huge number of individuals diagnosed with autism because each genetic event that leads to autism is rare,” said Dr. Raphael Bernier, a researcher and clinical director of Seattle Children’s Autism Center. “This large registry allows us to identify genetic trends. Once we know which genes to focus on, we can look at more individualized treatments for the future.” Read full post »

Miss Seattle Gives Back to the Hospital That Saved Her Life

Miss Seattle - Baby

Posey-Grager signs a children’s book for a young patient.

The halls of Seattle Children’s Hospital are a familiar place to Joell Posey-Grager, Miss Seattle 2016, and her family. Now 24, before she was wearing crowns and singing to audiences, she was a patient at Seattle Children’s.

Recently, she returned to the hospital not as a patient, but as a visitor to help brighten the day for other patients like her. With a little help from two very special guests, RJ Mitte, from the popular television show “Breaking Bad”, and Romi Dames, from Disney’s “Hannah Montana,” that’s exactly what they did.

Posey-Grager has always wanted to give back to the hospital that saved her life. Like the patients she visited in the inpatient playroom at Seattle Children’s, she understands the challenges of being in the hospital as a child so what better way to spread cheer than with a glittering crown and a story of hope. Read full post »

Doctor Partners On SIDS Newborn Hearing Study To Investigate Link To Inner Ear Damage

Jon Stephenson died of SIDS when he was 3 months old. His parents, Melissa French-Stephenson and David Stephenson, founded Jon’s Run, which donated $20,000 to support SIDS research by Seattle Children’s anesthesiologist Dr. Daniel Rubens.

Melissa French-Stephenson and David Stephenson know the devastation of losing a baby to Sudden Infant Death Syndrome (SIDS). In 2002, they lost their 3-month-old, Jon, to SIDS while he was at daycare. He was their first baby.

“We were late to daycare because he was in such a good mood that morning and we spent some time playing,” French-Stephenson said. “We have a video from earlier that week where he is laughing, smiling and kicking.”

The Stephensons, who live in San Antonio, Texas, now have two healthy boys, but they wanted to honor Jon’s legacy. They founded Jon’s Run, an organization that hosts a yearly 5K run that supports families who have lost a baby or young child and raises money for SIDS research.

“When you lose a baby to SIDS, you feel like they never had a chance to get started in life,” French- Stephenson said. “We were devastated when we lost Jon and felt it was important to bring other parents together who had lost a child to SIDS, or from any cause, to support each other in their grief.”

The Stephensons are committed to advancing SIDS research and Jon’s Run recently donated $20,000 to support a study by Dr. Daniel Rubens, an anesthesiologist at Seattle Children’s Hospital and principal investigator at Seattle Children’s Research Institute. Rubens will investigate a possible association between SIDS and hearing abnormalities in newborns.

“We’re excited to support Dr. Rubens’ work and hope answers come from this research,” French-Stephenson said. Read full post »

A Steady Diet of Data to Keep Refugee Kids Healthy

Dr. Beth Dawson-Hahn (left) and Dr. Anisa Ibrahim (right) study refugee children and nutrition.

Dr. Anisa Ibrahim was 6 in 1993 when her family came to Seattle from Somalia, driven from their country by civil war. In the beginning, everything about their new country was exciting and confusing — especially the supermarket.

“We were used to going to the market every day to buy fresh food,” recalls Ibrahim, now a third-year resident in pediatrics at Seattle Children’s. “It was hard to transition to buying bags and boxes of food in bulk.”

Foods the family relied on back home — like goat and guava — were not readily available. And snacks Ibrahim’s classmates pulled out of their lunchboxes — like cheese and Chex mix — were completely unfamiliar.

Unlike some refugees, Ibrahim and her siblings were healthy and well-nourished when they arrived. And thanks to her mom’s skill at cooking and adaptation, says Ibrahim, they stayed that way as they learned their way around the new food landscape.

As a doctor, Ibrahim wants to ensure other families can do the same. That’s why she carved out time during residency to work with Dr. Beth Dawson-Hahn, a pediatrician and research fellow in the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute, who is studying refugee children and nutrition. Read full post »

Ski Day Helps Teen Get Back on the Slopes After Being Paralyzed

Jacob Skiing 2

Jacob skis with the assistance of adaptive ski poles, called outriggers.

On January 6, 2015, 13-year-old Jacob Wald woke up and headed to school. The day started out just like any other day.

This day, however, would turn out to be very different; this day would change his life forever.

“I was playing basketball that morning,” said Wald. “Everything happened so fast. Eight hours later I couldn’t walk.”

That morning during school Wald began to suffer from back pain. It progressively got worse so he left school early. Soon after, he couldn’t stand anymore.

“My legs turned to JELL-O,” said Wald.

He was taken immediately to an emergency room in Tacoma. He stayed inpatient there for two weeks until he was transported by ambulance to Seattle Children’s Hospital. Read full post »

Vaccines Save Lives

Mother and Her Daughter

Mother and Her Daughter

Vaccines save lives. According to the World Health Organization, aside from clean water, the development of vaccines is the most influential public health intervention for improving the world’s health. The Centers for Disease Control and Prevention includes immunizations among the Ten Great Public Health Achievements in the 20th Century. It’s clear that diseases that once made children ill, and all-too-often took their lives, have been eliminated or greatly reduced thanks to the emergence of safe and effective vaccines.

“Vaccines are one of the most impactful public health successes of our time,” said Dr. Danielle Zerr, head of Infectious Disease at Seattle Children’s. “In the beginning of the 20th century, infectious diseases took an enormous toll on the population. Now, we can protect our children and the community with safe vaccines, and we’ve seen incredible benefits like the eradication of smallpox, the near elimination of polio and a substantial reduction in the rates of bacterial meningitis.” Read full post »

5 Ways to Practice Positive Parenting in April

Parenting is often described as the most challenging and rewarding experiences of a person’s life. Parents and non-parents are bombarded with opinions on how to raise children, yet so many parents end up feeling alone and isolated, striving for perfection.

April is Child Abuse Prevention Month, and sadly we could pack 10 football stadiums each year with the number of children that are victims of maltreatment. We know that a family history of abuse, mental illness and substance abuse play a significant role in these cases. There are also some simple, straightforward things we can do to navigate the bumpy road of parenting and promote positive parenting. Check out our April calendar for daily suggestions for incorporating positive parenting into your own life. Read full post »

Sleepy Time: Researcher and New Mom Explains Why Good Sleep Habits Are Important for Child Development

Dr. Michelle Garrison is a new mom and public health researcher the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute where she studies sleep.

I’m a new mom of a 4-month-old boy, and it’s giving me a new perspective on my work. Some new parents might be surprised to know that we are both getting pretty good sleep these days. I have researched child sleep, health and development for years, and now with my baby I am putting what I’ve learned into practice, especially when it comes to helping my son develop healthy sleep skills.

I study sleep issues in infants all the way to adolescents. As my son grows, I will help him as a preschooler through night terrors, change bedtime routines to meet the needs of an elementary school boy, and deal with the growing independence of the teenage years and the bedtime struggles that smartphones and tablets can bring. Read full post »