Patient Stories

All Articles in the Category ‘Patient Stories’

Craniofacial surgeon revolutionizes treatment for Apert syndrome, improves kids’ lives

The new technique was recently published in the journal of Plastic and Reconstructive Surgery, “Normalizing Facial Ratios in Apert Syndrome Patients with Lefort II Midface Distraction and Simultaneous Zygomatic Repositioning.”

Apert syndrome is a rare condition that occurs in one of 45,000 to 160,000 live births. For the children it affects, it’s very complex and is not only challenging to live with, but it’s also very difficult to treat.

That is, until now.

Before and after new surgeryThanks to Richard Hopper, MD, surgical director of the Craniofacial Center at Seattle Children’s Hospital, there is now a new treatment method that offers kids with Apert syndrome the opportunity to have a much better quality of life.

The new surgical approach not only treats symptoms more effectively, but also treats the “look” of the syndrome, offering children the chance to have a more normal face and head shape.

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Bioethics experts share personal perspectives on life-changing cases

BioethicsThis week medical experts from across the country will gather in Seattle to discuss “Cases That Keep Us Awake at Night,” the theme of the 2013 Pediatric Bioethics conference. It’s not uncommon for things to keep us awake at night—a disagreement with a friend or neighbor or anxiety over a big work assignment—but the issues that clinicians and bioethicists will tackle at this confab are quite different.

Most of us, for instance don’t often think about the following questions:
• Should an organ transplant be performed over a family’s objections?
• Should Child Protective Services intervene when a family fails to address the eating habits of a morbidly obese child?
• Should healthcare professionals withdraw medical interventions against the wishes of a family?

Doctors, nurses and others will also discuss the intersection of the personal and the professional, and how it affects their work. At last year’s conference, Douglas Opel, MD, MPH, of Seattle Children’s, spoke about being diagnosed with Crohn’s disease and how it altered his role as a physician. Excerpts from that talk, which was published in its entirety in The Hastings Center Report late last year, are included below.

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One mother’s creation provides a valuable tool for tiny cancer patients

Robin in her Hickman HiderOn July 13, 2012, Robin Ulness was diagnosed with leukemia at just 9 months old.  Gayle Garson, Robin’s mother, said the diagnosis was a complete surprise and it all came on very quick.

“Getting the news was devastating,” Gayle said. “It was like getting kicked in the stomach by a horse. It was so surreal; I just kind of went numb.”

Robin was diagnosed with infant acute lymphocytic leukemia (ALL), which arises from white blood cells called lymphocytes that do not mature properly. While ALL is the most common type of cancer in children, infant ALL is very rare.

Robin’s diagnosis marked the beginning of two years of treatment. Robin came to Seattle Children’s Cancer and Blood Disorders Center and began six weeks of inpatient care. She then had four more rounds of chemo, which required a number of inpatient stays.

While Robin was inpatient, Gayle came up with an innovative idea for something that would not only help her daughter but would also help other children going through treatment.

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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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