Patient Stories

All Articles in the Category ‘Patient Stories’

Spinal fusion helps teen gymnast overcome scoliosis

In honor of National Scoliosis Awareness Month, Alexandra “Love” Wahl shares her experience with scoliosis and her path to finding her ‘new’ self.

“Two rods, 16 screws, one new me”

Love Wahl before scoliosis Alexandra “Love” Wahl was an exceptional gymnast. A fierce competitor all of her life, Love grew up in the gym and in 2012 at age 13, she qualified for the Washington state championships.

But one day while practicing her routine on the high bars, a coach told her she needed to “stay straight.” Love was confused – she felt she was as straight as she could possibly be. The coach called Love off the bars and had her bend forward so she could look at her spine. The coach slowly turned and motioned for Love’s mother, Wanda, to come down from the stands. Love’s spine was severely curved, forming a prominent “S” shape.

“From that moment our lives changed,” recalls Wanda. Read full post »

Tips for parents of children enrolled in a research study

On the Pulse recently posted a story on bioethics and research from Ben Wilfond, MD. In that story, Wilfond defended a research study that had been criticized by federal officials over the informed-consent requirements. We thought it would be helpful to follow up with tips for parents who are interested in or have children enrolled in research studies. This is the first in what we hope will be a series on the topic, with both parents and researchers weighing in, to increase awareness about research at Seattle Children’s.

Katelyn and Jennifer MhyreAs biomedical researchers, my husband and I are both very invested in the research process. Our daughter, Katelyn, has a disease that is incurable, but we are optimistic that her participation in various research studies could have a positive impact on not only her life, but also on the lives of other children in the future. Nevertheless, we take each opportunity to participate in a study under thoughtful consideration before signing our consent.

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Flushing out new cures for intestinal disease

People with good digestion

You can’t blame Patient #1 for not wanting to share his name; he’d rather not be known as the guy who swallowed poop in the name of science.

But he does want you to know he is willing to go to extremes to help find a cure for Crohn’s disease, an autoimmune disorder that causes severe abdominal symptoms and robs his body of nutrients.

It’s not as crazy as it sounds. Fecal microbiota transplantation (that’s right – fecal, as in feces, as in poop) is a tried-and-true treatment for recurrent bouts of Clostridium difficile infection (or C. diff), a dangerous intestinal bacteria.

It works by repopulating the intestinal tract with “good” bacteria, which are often wiped out by the antibiotics used as the first line of defense against C. diff. Read full post »

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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