On the Pulse

One Mom’s Journey Inspires Her to Build a Community for Kids and Families Affected by Pediatric Stroke

Addison

Addison, 3, suffered a stroke at birth.

Words can hit like a ton of bricks. For Kaysee Hyatt, it was four words that hit her so hard her world momentarily stopped.

At the start of a weekend camping trip with her family, she received a call from her doctor with the results of her daughter’s magnetic resonance imaging (MRI), “It was a stroke.” The world faded before Hyatt and the isolation of such a diagnosis set in, not only for her, but for her baby girl, Addison.

Before that moment, Hyatt had never heard of pediatric stroke, but as she would find out, it was not that uncommon. Approximately one in 2,000 newborns have a stroke each year. For children age 1 to 18, stroke occurs in about 1 out of every 20,000. Addison suffered her stroke during birth.

Addison’s family noticed something was wrong in her first few months of life; her mobility was limited and she completely favored her right side. When she was 6 months old, they received the diagnosis that explained why.

Stroke happens when blood that carries oxygen stops flowing to the brain. Within minutes, brain cells can begin to die, which can lead to stroke symptoms and can sometimes cause neurological issues or death. Read full post »

My Son Had Mental Illness

I love this picture of me and Chad on a dinner cruise in Cabo San Lucas, Mexico.

Laura Crooks, director of Rehabilitation Medicine, shares how losing her son, Chad, sent Laura and her husband on a mission to eliminate the stigma around mental illness.

My son had mental illness.

It seems so strange to write those words. Instead, I want to write that he was creative and loving and gentle. I want people to know him as a big brother and a son who lived in a large and loving family. I want him to be famous for his dream of inventing bold new means of space travel. But today, the part of Chad’s life I am compelled to share is that he had mental illness.

Chad was diagnosed with schizophrenia in April 2015. One evening, not long after telling his father and me that he had been hearing voices, he became suicidal.

I remember that night like it was yesterday. I remember taking him in the car, his dad holding him in a blanket at 21 years old, just so he wouldn’t jump out of the car as we made the trip up Interstate 5 to the University of Washington Emergency Department.

I remember coaching Chad on what to say once we got there: to tell them he wouldn’t make it through the night if they let him go. I remember how hard it was as a mom to tell my son to say these things. But I also know the truth about limited resources for mental health, and that this was the only way for him to truly get help and to keep him safe.

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The Dangers of Home Renovation: Keep Kids Safe During Repairs

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Dr. Sheela Sathyanarayana says home renovations can expose mold, lead, asbestos and fumes, and families should take precautions to protect pregnant women and children.

Families planning home renovations should be aware that the walls they plan to tear down could contain hidden dangers that can hurt the developing fetus and children’s growing bodies.

Dr. Sheela Sathyanarayana is a pediatric environmental health specialist at Seattle Children’s Research Institute, and she says that people considering home renovations, especially in older homes, should take extra precautions if they are pregnant or have children.

“Home renovations can bring out things like dust, mold and fumes that are harmful to children and pregnant women,” Sathyanarayana said. “With a little extra planning, families can keep renovations safe for everyone in the home.” Read full post »

Bullying Report Describes Effects On Child Development, Need For Cyberbullying Monitoring

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A new report on bullying describes its effects on childhood development and calls for better monitoring and understanding of cyberbullying.

A new report from the National Academies of Sciences, Engineering and Medicine describes the effects of bullying on childhood development and calls for a better understanding of cyberbullying. Dr. Frederick Rivara, Seattle Children’s Guild Endowed Chair in Pediatrics, chaired the report committee, and Dr. Megan Moreno, principal investigator of the Social Media and Adolescent Health Research Team at Seattle Children’s Research Institute, was a committee member. On the Pulse sat down with them to discuss the new findings and what families can do to protect their children from bullying.

What new information or findings does this report offer about bullying? What are the key takeaways?

Moreno: While bullying has been around for decades, there are many misconceptions about bullying. This report describes and synthesizes the current scientific evidence so that we can have a shared understanding of the current state of the science on bullying.

The first takeaway is that bullying experiences can lead to biological changes for the target of bullying, including stress response and brain activity alterations. Read full post »

Boy Donates Part of His Brain to Science, Researchers Discover Major Cause of Epilepsy

Alden Bernate, 12, needed neurosurgery to stop his relentless seizures. Brain tissue donated from that surgery led to a discovery of a gene linked to intractable epilepsy.

Alden Bernate, 12, is only a middle school student, but he’s already played a big part in groundbreaking epilepsy research. He donated brain tissue for scientific research after he had surgery to disconnect part of his brain that was causing severe seizures.

The human genetics team at Seattle Children’s Research Institute, led by Dr. Ghayda Mirzaa and Dr. William Dobyns, used Alden’s brain tissue along with the tissue from other patients to discover a new gene mutation that can cause intractable epilepsy. The finding opens the door to potential treatments that target that gene. The team’s findings are published in the current issue of JAMA Neurology. Read full post »

My First Mother’s Day

Keli Hansen and her family.

Keli Hansen and her family.

My first Mother’s Day was in 2004. I anticipated sleepless nights and lots of happiness around the arrival of my first son, Adam, due in early May. Instead, there were potted plants and sympathy cards and a single white rose in a blue vase after my son was stillborn just before midnight on April 24.

I’d gone in for a regular 38 week checkup, and there was no heartbeat. It’s the only vist my husband didn’t attend, since we believed what everyone had said, “Once you’re through the first trimester, everything’s fine.” I went directly from the doctor’s office to the labor and delivery floor, where I had to start the process to deliver my baby who was not alive. The medical team started to induce my labor, but then had to stop once their attention shifted to some emergency C-sections. I was left to try to sleep, while around me women were delivering their living, breathing babies. In the morning, the induction process was started again.

After Adam was born, I was reluctant to hold him. Every day, I am thankful for the nurse who encouraged me to take him in my arms. Now I wish I had taken more time with him. He is the child who made me a mother, and yet celebrating Mother’s Day was the last thing on my mind that May. Read full post »

Group of Eighth-Grade Girls Raise Money and Awareness for Mental Health

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A group of seventh-grade girls formed the Island Friends Junior Guild.

In March 2015, a group of seventh-grade girls from Mercer Island came up with the idea of starting a guild to support Seattle Children’s, the Island Friends Junior Guild. They banded together and picked a cause they rarely hear their peers talk about, but believe could use a little more support: mental health.

In honor of Mental Health Awareness Month, members of the Island Friends Junior Guild are sharing their story to help inspire others to end the stigma around mental health and raise awareness for Seattle Children’s Psychiatry and Behavioral Medicine Unit (PBMU).

“The PBMU doesn’t get much attention,” said Tara Manhas, an Island Friends Junior Guild member. “Mental health isn’t really seen as a positive thing. There’s a negative stigma around it. We want to change that.”

Seattle Children’s Hospital Guild Association is the largest all-volunteer fundraising network for any hospital in the nation. In total, there are 450 different guilds that raise money for the hospital, and out of all 450 guilds, one exclusively supports the PBMU. Read full post »

New Gene Sequencing Technology Opens Door to Faster Diagnoses

Kaylyn Milligan and her son, Owen. Milligan lost two babies due to a genetic mutation she didn’t know she had. After a careful review of her genome, Dr. James Bennett was able to identify the mutation and Milligan was able to make educated family planning decisions.

There are times when a child comes to the hospital with symptoms and even after a thorough exam and many tests, doctors can have a difficult time making a diagnosis. Now, doctors and researchers at Seattle Children’s have a new tool that will be key in finding answers for patients and their families: A next generation gene sequencer that can be used to sequence DNA quickly and make diagnoses in complex cases.

The machine, an Illumina NextSeq, can sequence all of the genes in the human genome in just 24 hours. The enormous amount of data generated by this machine will be processed using the PierianDx analytical pipeline.

“This new technology will dramatically decrease the cost of gene sequencing for our patients and will help us make quicker diagnoses, especially in complicated cases,” said Dr. James Bennett, a geneticist and researcher at Seattle Children’s Hospital and Seattle Children’s Research Institute. “Families can sometimes go years without a diagnosis. Now, we’ll be able to provide more answers and identify potential therapies based on what we find in the genome.” Read full post »

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 »