Author: On the Pulse

Transplant Saves First ‘Bubble Boy’ in Wash. State Detected with Newborn Screening

This is a special guest post from JoNel Aleccia, staff writer at Fred Hutchinson Cancer Research Center. See the original article and photos here.

Rachel Dixon holds her son Ezra, who was born with severe combined immunodeficiency. SCID affects about 1 in every 50,000 babies born in the U.S. Nearly two months after having a life-saving bone marrow transplant from his brother, Judah, he's doing well. Photo courtesy of  Bo Jungmayer / Fred Hutch News Service

Rachel Dixon holds her son Ezra, who was born with SCID. Nearly two months after having a life-saving bone marrow transplant from his brother, he’s doing well. Photo courtesy of Bo Jungmayer / Fred Hutch News Service

Ezra Dixon was born April 7, four months after the state of Washington first starting screening newborns for the disorder commonly known as “bubble boy disease,” which leaves its patients at the mercy of common germs.

Some 22,610 babies were tested before him and more than 28,000 have been tested since, all negative, health records show. But Ezra is different.

The bald, blue-eyed boy is the only child in the state so far diagnosed with severe combined immunodeficiency, or SCID, detected through the program.

When staff at the Washington State Department of Health Newborn Screening Lab analyzed the drop of blood pricked from his heel shortly after birth, they found none of the T-cells that protect the body from infection, a certain sign of the rare disorder.

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Boy gets smile for his 12th birthday

Christian smiling at soccer practice right before his birthday.

Christian at soccer practice before his birthday.

Christian Roberts was as excited for his 12th birthday as any child would be. But this April marked a very special occasion. It was the first time he could express that excitement with a smile.

Twelve years ago, Christian was born deaf and with bilateral facial paralysis due to a rare genetic anomaly called CHARGE Syndrome. For his entire life, the happy, playful Dallas boy who loved video games and LEGO bricks couldn’t move his facial muscles to smile. Christian wanted nothing more than to better communicate with his family, and with others who don’t know sign language.

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How to keep kids safe with the legalization of marijuana

The legalization of marijuana in the state of Washington, along with the impending legalization of marijuana sales this spring, has sparked concern among many parents who have questions on what this means for their children.

Leslie Walker, MD, division chief of Adolescent Medicine at Seattle Children’s Hospital, recently co-authored a guide for parents about preventing underage marijuana use. Walker says that it’s important for parents to know the facts, learn how to talk about marijuana and be aware of the messages that their children may see.

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Fecal transplant research generates interest from around the world

Dr. David Suskind

Dr. David Suskind

Late last year, David Suskind, MD, shared the good news with The Seattle Times that he saw positive results in the first FDA-approved studies of fecal transplants in children with inflammatory bowel disease (IBD) and, more specifically, in those with Crohn’s disease.

Our blog post on the research, published last June, has generated interest from families as far away as Japan.

Fecal transplants — a hot topic? Actually, it is. The research has been widely covered by the media and is even more important to the patients with IBD and families who clamor for new treatments and information that can make daily living easier and more “normal.” On the Pulse sat down with Suskind to follow up on his research, and to find out what’s next.

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Looking beyond face value: How one patient learned to embrace herself

At age 4, Natalie Merlo was diagnosed with a facial condition that left her feeling self-conscious and very different from other people.  While growing up, she even avoided having her photo taken.  Through the work with her care team at Seattle Children’s Craniofacial Center, Natalie has gained confidence, has happily accepted who she is and has a powerful message for others – “it’s OK to be different.”

Natalie, now 18 years old, recently entered college with a new facial structure and a new outlook on life after completing two major surgeries. For most of her life, Natalie lived with a severe under bite and deep, wide-set eyes and cheek bones, as a result of a genetic condition called Crouzon Syndrome. While her features were typically brushed off by strangers, it still affected the way she thought about herself.

“These differences were things other people glazed over, and didn’t really notice at first glance,” said Natalie. “But to me, they were so unfortunately obvious. I wish I could say that I didn’t let these things phase me, but that was far from the truth.”

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Remembering the Sandy Hook tragedy, protecting kids from gun violence

On Dec. 14 of last year, 20 children and seven adults lost their lives in the senseless tragedy that took place at Sandy Hook Elementary School in Newtown, Conn. As we approach the anniversary of this horrific event, we remember and mourn the victims and the families who have been affected by this tragedy.

No parent should ever have to suffer through the pain of losing a child to gun violence. And with guns in more than one third of all U.S. households, firearms present a real, everyday danger to children, especially when improper safety techniques are followed.

Frederick Rivara, MD, MPH, division chief of general pediatrics and vice chair of the Department of Pediatrics at Seattle Children’s Hospital, and Dimitri Christakis, MD, MPH, director of the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute, offer the following tips and advice for parents looking to keep kids safe from firearms, and to help reduce their exposure to gun violence in the media.

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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 »

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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Building Hope, Part 5: Meet the people behind the design

Building HopeMore heads are better than one—especially when it comes to designing Seattle Children’s new expansion, Building Hope. Children’s brought together a unique advisory board made up of patients, families and hospital staff to provide feedback throughout the design process.

With Building Hope, Children’s wanted to create an environment that would support the physical, emotional and psychological aspects of healing. Who better to understand the subtleties of the patient experience than actual patients and their families?

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Building Hope, Part 4: A closer look at the new Critical Care Unit

Porch

Life-threatening illness or injury can strike any child at any time. Seattle Children’s Hospital’s critical care medicine teams have the expertise and technology to treat the most fragile patients in the region, including those born prematurely, recovering from complex surgeries, or suffering from acute illness, chronic disease or injuries.

On April 21 the hospital’s Pediatric Intensive Care Unit (PICU) and Cardiac Intensive Care Unit (CICU) will move to the Building Hope expansion. With a new home comes more space and new features that will help patients and families feel more comfortable while they are at Children’s.

“There are so many great new features in the critical care unit at Building Hope,” says Cathie Rea, ICU director. “We know our staff, patients and their families will find the new space a wonderful atmosphere of healing.”

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