Patient Stories

All Articles in the Category ‘Patient Stories’

Revolutionary Surgery Helps Little Girl Breathe Without a Tracheostomy For the First Time

Hannah Schow,11, with mother, Jennifer Schow.

Hannah Schow,9, with mother, Jennifer Schow.

There were only a few weeks to go in Jennifer Schow’s seemingly normal pregnancy when her world turned upside down.

She noticed she’d been gaining weight suddenly, more than she thought was expected. Her doctor said everything seemed fine, but something didn’t feel right.

Feeling uneasy, she and her husband got a second opinion and the news they received confirmed their fears.

“I could see the baby’s face on the ultrasound screen,” said Schow. “I joked that it looked like her ear was missing.”

The ultrasound technician became quiet and said she’d be right back. That’s when Schow knew there was something seriously wrong. Read full post »

Care Team Brings Prom to Teenager Waiting for a New Heart, Helps Her Attend Graduation With a Second Chance at Life

Bella Anderson, 18, missed nearly two months of her senior year waiting for a heart at Seattle Children's.

Bella Anderson, 18, missed nearly two months of her senior year waiting for a heart at Seattle Children’s.

Isabella (Bella) Anderson, 18, was running out of time. Her heart was failing and doctors didn’t know how much more it could withstand. She needed a change in luck and some good news.

Finally, Bella got just that: a surprise and the news she’d been waiting for.

A long road to transplant

At only 10 years old, Bella went to see the doctor for strep throat, but doctors found something more alarming: a heart murmur. She was diagnosed with hypertrophic cardiomyopathy, a disease of the heart muscle’s wall.

From that day forward, she was monitored closely by Seattle Children’s Heart Center, one of the best pediatric cardiology and cardiac surgery programs in the U.S., and the top-ranked program in the Pacific Northwest, according to U.S. News & World Report.

Unfortunately, as time progressed, so did her heart condition. Cardiomyopathy reduces the heart’s ability to pump blood effectively and can lead to congestive heart failure.

Slowly, her heart began to fail. Read full post »

Teen Discovers Talent In Punching Bag After Losing Use Of Legs

Dr. Michael Astion coached Isaac Turnbull in speed bag while the teen was in the Seattle Children’s Rehabilitation Unit.

After his all-terrain vehicle crashed near his home in Wasilla, Alaska, in March, Isaac Turnbull had the presence of mind to call his dad. He was okay, he said, except for one thing: He couldn’t feel his legs.

Isaac, 16, soon learned that he had fractured his back and injured his spinal cord. In a split second, he lost the use of his legs.

After three weeks in an Anchorage hospital, Isaac came to Seattle Children’s Rehabilitation Unit to continue his recovery and begin to learn the skills he would need to live in a wheelchair.

“When he got here he was feeling pretty hopeless — you could see it all over his face,” said occupational therapist Emily Sabelhaus, who worked with Isaac.

The goal of rehabilitation at  is to help patients find a way to get back to the activities they love, Sabelhaus said, but at first Isaac — an Alaska kid who loves to hunt and fish and be outdoors — couldn’t’ imagine how he would do that. He couldn’t see that his life, while different than he expected, could still be fulfilling and happy.

Halfway through his six-week stay on the rehab unit, Sabelhaus asked Isaac if he maybe wanted to punch something. Then she brought in an expert, Dr. Michael Astion, to show him how. Read full post »

Mom Donates a Kidney to a Stranger to Save Her Son as Part of a Life-Saving Kidney Chain

Nigel Dalton 008Belinda Hudson would do anything for her 18-year-old son, Nigel Dalton. So when he needed a kidney, she didn’t hesitate to offer one of her own.

Unfortunately, she wasn’t a match.

“I always thought I’d be able to give him mine,” said Hudson. “I’m his mom. I couldn’t believe I wasn’t a match. I felt so helpless.”

She was, however, a perfect match for someone else, a complete stranger. So again, without hesitation, she offered her kidney, and in return her son found a match as well.

And so, through the National Kidney Registry, a chain of six people and three kidneys was formed, all linked together by the gift of life. Read full post »

From 35 Percent Chance of Survival to Five Years Cancer-Free, Double Stem-Cell Transplant Improves Outcomes for Kids With High-Risk Neuroblastoma

Katie Belle, now 10 years old, was diagnosed with high-risk neuroblastoma when she was 3.

Katie Belle, now 10 years old, was diagnosed with high-risk neuroblastoma when she was 3.

In August of 2009, when Katie Belle was just 3 1/2 years old, a persistent fever led her to Seattle Children’s Emergency Department where doctors discovered a baseball-sized tumor in her abdomen. She was diagnosed with high-risk neuroblastoma, a cancer that starts in immature nerve cells and develops into tumors. Her chance of survival: 35%.

“I felt like someone stuck a dagger in my stomach,” said Katie’s mother, Jennifer Belle. “I couldn’t breathe. However, I had to put on a brave face for Katie.”

For children with high-risk neuroblastoma, which according to the National Cancer Institute occurs in approximately one out of 100,000 children, Katie’s prognosis was not uncommon. On average, less than 50% of children with this disease live five or more years after diagnosis.

However, a Phase 3 trial performed by the Children’s Oncology Group (COG), and led by Seattle Children’s oncologist Dr. Julie Park, has found that adding a second autologous stem-cell transplant, which is a transplant that uses the patient’s own stem cells, to standard therapy improves outcomes for patients with high-risk neuroblastoma. Read full post »

Doughnut Shop Tip in Texas Leads Family to Immunotherapy Cancer Trial, Zane Becomes Cancer-Free

“As a parent, you never want to hear that your child has cancer,” said Paul Esposito, of Plano, Texas. “It creates an emotion that starts at your feet and takes hold. It’s devastating.”

This was the terrible news Paul and his family received in 2010 when his son, Zane Esposito, was only 7 years old. Zane, now 12, was diagnosed with acute lymphoblastic leukemia (ALL) in June 2010. Zane underwent three grueling years of cancer treatment, including 365 days of chemotherapy, before reaching remission. Two years later, Zane relapsed in January of this year. Their only option: another three years of aggressive chemotherapy.

“I really don’t like chemo, it’s the worst,” said Zane. “My back hurt super bad due to tiny fractures from the chemo. I couldn’t even bend over to tie my shoes. And here I was having to start another three years all over again.”

Not only was the thought of starting over daunting, but Zane faced a major hurdle as he began chemotherapy – his cancer was not responding to the treatment. He had refractory ALL. Zane and his family were desperate for another treatment option.

About 2,000 miles away in Seattle, Wash., they would find that other option. But first, they would learn about it in the most unlikely place: a doughnut shop. 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 »

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.

Read full post »

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 »