Patient Stories

All Articles in the Category ‘Patient Stories’

Lawyers team with doctors to help patients navigate legal system and get the care they need

Medical Legal PartnershipWhen 14-year-old Ryan Hribernick of Shoreline, Wash., started having trouble propelling his manual wheelchair, his healthcare team at Seattle Children’s recommended he add power-assist devices to give his wheels an extra boost.

But instead of approving the modification, Washington state – which pays for a portion of Ryan’s medical equipment through Medicaid – offered him a motorized wheelchair.

Not a good solution, says Susan Apkon, MD, chief of rehabilitation medicine at Children’s.

“Pushing a manual wheelchair helps Ryan maintain upper body strength and overall health,” says Apkon. “He needs power-assist wheels to safely go up and down ramps and keep pace with his friends, but he doesn’t need a motorized wheelchair to do this.”

Ryan’s mom, Kristina Ray, was concerned about the social and emotional impact on her son, who has cerebral palsy and is successfully navigating life – and middle school – with a disability. “More than anything, Ryan wants to fit in,” she says. “Putting him in a power chair would make him stick out.”

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Liver transplant unlocks new life for girl with propionic acidemia

Kaitlin Burns_liver transplantIn a northern California suburb in 1999, Kaitlin Burns was born very sick, that much was certain. She was extremely lethargic, vomited non-stop and soon wouldn’t eat anything. When her family finally received a diagnosis two weeks after her birth, the news was devastating.

Kaitlin was diagnosed with propionic acidemia, a rare, inherited metabolic disorder that affects about one in 100,000 in the United States. Propionic acidemia prevents the body from processing protein properly, leading to an abnormal buildup of a group of acids known as organic acids. Abnormal levels of organic acids in the blood, urine and tissues can be toxic and can cause serious health problems.

Michelle Burns, Kaitlin’s mother, recalls how the local hospital at the time was their second home. “During the first year of her life, I can’t even count on my fingers and toes how many trips we made,” she explains.

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Mom and Children’s bring boy back to life after near-drowning

Travis AndersonFriday, July 13, 2012 was the day 9-year-old Travis Anderson drowned in the Pilchuck River near Snohomish, Wash. It was also the day that his mother, Kim, and the emergency team at Seattle Children’s saved his life.

Travis, a wiry redhead, was wading in a shallow portion of the river, near his mom, his brother and sister, and his best friend. He lost his footing. The current swept him downstream and beneath a log, where he became trapped under water. Kim and Travis’s older brother Jacob couldn’t free him. After a few minutes, a bystander helped shift the log, and Kim pulled her youngest child to the river bank.

Travis was a ghostly pale gray, his eyes half open. Blue lips and purple circles around his eyes indicated cyanosis, a lack of oxygen in the blood. He was unresponsive, with no pulse. Kim began CPR while her daughter called 911.

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Laser ablation surgery for epilepsy offers safer and more precise treatment

Dana Lockwood, 24, has had epilepsy, a disorder of the brain that involves repeated seizures, for as long as he can remember. Seizures were just a way of life and the frequency ranged from having one every one to two weeks, to having several throughout a week, all while on several medications.

Dana LockwoodDana most commonly experienced simple seizures, which he describes as brief and disorienting surges of mental energy. Occasionally he also had complex partial seizures, which impair consciousness, and very rarely he had grand mal seizures  that involved his entire body and required a trip to the emergency room. There was no telling when these would occur.

“Living with epilepsy has been quite difficult,” said Dana. “I couldn’t drive, which was hard because there is little public transportation where I live. I had to be heavily medicated and it made it hard for me to be independent. In general, it was just very disruptive to my life.”

Dana had nearly given up on his dream of living abroad and teaching English as a second language. His seizures made that an impossible option.

Now, after undergoing a cutting-edge treatment in February, Dana is seizure free. He hasn’t had a seizure in more than a month and will finally be able to learn to drive and start living a more independent life.

So how did he get rid of his seizures?

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Dad’s gift to his daughter – Evelyn’s transplant story

Evelyn Sherman had a kidney transplant this past Halloween, just 10 days before she turned three years old. Her dad, Keith, was her donor. In honor of Donate Life Month, Evelyn’s mom, Julianne, reflects on their journey as they near the six-month anniversary of the transplant.

Getting the diagnosis

Evelyn was nine months old when she started falling off the chart. I thought my milk supply had dropped off so we were just sort of waiting it out, but she was still falling off the curve. Then we tried to beef up her diet and that wasn’t working.

Evelyn_dialysis By the time we got the diagnosis when she was 15 months old, we had made a tour of Children’s. She had some other physical manifestations of something being wrong. She had a sixth toe. She had wine stains on her skin. So we’d been to orthopedics to have her toe removed. And we’d been to dermatology. We felt like we were ending our tour when we got to nephrology. It was our last stop.

Evelyn was diagnosed with renal dysplasia, meaning that the kidney developed incorrectly in the beginning. She also has kidney reflux and that means that the urine is going back up into the kidneys from the bladder. It often causes a kidney infection, but for whatever reason, she didn’t really manifest that.

When the doctor delivered the news that there was something wrong with her kidney, I remember thinking, “I feel like you’re saying something really important to me and it’s just not registering because you have got to be talking about somebody else.” I couldn’t comprehend what he was saying, that I had a critically ill child.

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How Seattle Children’s inspired one family to adopt children with special care needs

Mitchell with little sister Alaina

Mitchell with little sister Alaina

Seattle Children’s is considered a trusted resource for families needing special care. For the Wall family of Ephrata, Wash., their trust in Children’s, including the Craniofacial Center and Orthopedics and Sports Medicine teams, enabled them to become the family they are today. Mindy and Darryl Wall have six children – three biological and three adopted – four of whom have special needs. Here’s their story…

In 1993, the Wall’s second son, Mitchell, was born with a clubfoot and was later diagnosed with Asperger’s Syndrome. At birth he began receiving care at  Children’s. Not only was he diagnosed with Asperger’s at Children’s, but he had two different clubfoot surgeries by the Orthopedics and Sports Medicine team, as well as his bracing and casting at the hospital. All of this seeded a long and trusted relationship between the hospital and the Walls. The care Mitchell received helped Mindy and Darryl become more comfortable raising children with special needs, and inspired them to adopt children who needed medical assistance, because they knew the hospital was there to help.

“We got to trust and know our way around Seattle Children’s,” said Mindy Wall. “With this knowledge and resource, we knew we could provide a loving home to other children with special needs.”

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Two kids, two heart defects – One family’s journey

For the Millers of Silverdale, Wash., Valentine’s Day is extra special this year. For the first time in five years, their calendar is free of surgeries and hospital stays for siblings Tessa and Gabriel, who were both born with heart defects.

A complicated, changing diagnosis

The Millers’ complicated journey began in 2008, before Tessa was even born. Ariana and Chris learned that she had Down Syndrome and an atrioventricular septal defect (also known as an AV canal defect). The defect occurs when the heart doesn’t form properly before birth, leaving a hole in the middle of the upper and lower chambers.

Tessa 7.14.12

Even while she was still pregnant, Ariana began seeing Seattle Children’s Heart Center team. Soon after Tessa’s birth, she met Terry Chun, MD, who has cared for Tessa since she was just a few days old.

“This family has been incredibly resilient,” Chun says. “Even before Tessa was born they’d gotten the news that she had heart disease, but then after she was born, it turned out that she had more complicated heart disease than was initially thought.”

Most babies with Tessa’s defect will need just one surgery when they’re between four and six months old. Instead, she has had five surgeries in less than four years – the first when she was just five months old.

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Children’s helps state catch ‘Bubble Boy’ condition in newborns

Troy Torgerson's lab helped the state prep for SCID newborn screening

As the 2013 to 2015 state budget moves toward approval this year, immunology researchers and clinicians at Seattle Children’s will be following it as closely as many of us followed last Sunday’s Super Bowl.

They will be cheering for one small line item deep inside the document: A provision to ensure every baby born in Washington is screened at birth for severe combined immunodeficiency (SCID), a rare condition that makes it impossible to fight off infection.

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Patients’ imaginations come alive in animation workshop

As part of Seattle Children’s collaboration with Children’s Film Festival Seattle, professional animators Charlotte Blacker from England and Britta Johnson from Seattle offered two days of animation workshops to hospital patients.

With short stories featuring a wide range of objects and characters from aliens, exploding stars to “banana slips”, patients’ imaginations came alive as they created their stop motion animation films.

To make the films each patient came up with a story idea, made their characters or objects that would be in their film and then moved them in small increments between individually photographed frames. Once the frames were played together as a continuous sequence, their animation was born.

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Craniofacial microsomia: A young boy transformed after surgery

Mavrick before surgery

Seven-year-old Mavrick Gabriel of Kenai, Alaska could be described as being “beyond his years.” He’s compassionate in a way that you don’t often see with young children, and he wants to educate others about his birth defect, craniofacial microsomia, and to help kids in the process.

Mavrick was born without a left ear and with a very small jaw that did not have a joint on one side.  He can’t eat solid foods, has to use a feeding tube and his speech is affected. In June 2012, Gabriel and his family invited television cameras to capture a surgery—one of dozens he’s endured—that helped move him closer to having a jaw.  But he doesn’t want you to feel sorry for him. “Most kids never have to go through this and I’d like to help other people with what I’m going through,” Mavrick said.

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