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Patient Stories

All Articles in the Category ‘Patient Stories’

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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Breaking the silence after stillbirth – One family’s story

This Thursday, Jan. 31, is our daughter Emily’s 10th birthday, a time that should be filled playfully gathering with friends and giddily unwrapping presents. But Emily will never experience any of those things – she was born still.

Stillbirth is an all-too-common tragedy. In the U.S., 26,000 babies are stillborn every year – that is one baby, one family, every 21 minutes.

We were so excited to be pregnant with our first child, we never considered the possibility of a stillbirth—it was the only chapter in our pregnancy book that we skipped.

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Christian Bale makes special call to young Batman fan battling leukemia

Jan. 30, 2013: Zach received a care package full of Batman goodies from Christian Bale this week, and his reaction was priceless:

Jan. 25, 2013: A young Seattle Children’s patient – and avid Batman fan – got a special surprise last week, when actor Christian Bale called him in his hospital room. 8-year-old Zach Guillot, of Dallas, Texas, is battling acute myeloid leukemia. He is currently a patient in the hospital’s Cancer and Blood Disorders Center, where he is recovering from chemotherapy in hopes of later receiving a bone marrow transplant. It will be his third transplant since he was first diagnosed in February 2010.

“Everyone knows Zach is a big Batman fan,” said Jeff, his father.  “One of our friends called Christian Bale’s agent, cold-called-him from what I understand, and told him Zach’s story.”

On Jan. 18, Bale called Zach to talk about costumes, little brothers who moonlight as trusty sidekick “Robin,”and Zach’s homemade Batmobile. Zach’s parents, Julie and Jeff caught the conversation on video and shared it on YouTube.

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Seattle Children’s Patients Star in the Children’s Film Festival Seattle

TheatreNorthwest Film Forum’s 8th annual Children’s Film Festival Seattle will be rolling out the red carpet to children and their families today through Feb. 3. It has become the largest film festival on the West Coast dedicated to this young audience, reaching more than 10,000 people during festival screenings in Seattle and a subsequent festival tour of 15 to 20 U.S. cities.

New this year, current and former patients at Seattle Children’s Hospital will have a few very special starring roles in the festival.

Lights, camera, action!

The festival will showcase more than 120 innovative, inspiring and fun films from 38 countries. Children’s is excited that five short films created by patients or featuring patients’ creative works have been selected to be shown at the festival.

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Cure for Pain: How physical therapy helped Pasco pre-teen get her life back

Chloe SchmidtIf there’s one thing 12-year-old Chloe Schmidt of Pasco, Wash., is thankful for this holiday season, it’s the absence of pain.

For her mom, Erin, it’s the Pain Rehabilitation Program at Seattle Children’s – and the physical and occupational therapists, psychologists, nurses and physicians who helped her daughter move past the pain that derailed her life earlier this year.

Chloe’s downward pain spiral started with a cat bite in January. By February, she had body aches that her pediatrician blamed on growing pains. A week later it morphed into a searing, all-over pain.

That’s when Erin scooped Chloe off the floor and rushed her to a local emergency room.

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A Family’s Journey: Cleft Lip and Palate Surgery at Seattle Children’s Hospital

 

In October 2010, Heather Landis received a phone call no expectant mother ever wants to receive. At five months pregnant with their second child, the doctor told Heather and her husband Dale that the baby girl they were expecting would be born with a cleft lip and palate, birth defects that occur early in pregnancy. After the initial shock of the diagnosis, the Landis’s began preparing themselves for the difficult road that awaited them. Struggling with her emotions, Heather put what she was feeling into a candid and personal blog detailing the months before and after the birth of her daughter, Danielle.

Her blog detailed Danielle’s trips to Seattle Children’s Hospital, where Dr. Hitesh Kapadia initiated the repair process using a nasoalveolar molding (NAM) device – a non-surgical method of reshaping the gums, lips, and nostrils  of children with large cleft lips and palates prior to surgery. Following months with the NAM, the craniofacial team lead by Dr. Raymond Tse performed multiple surgeries to correct Danielle’s cleft lip and palate. Danielle is currently doing very well and her cleft lip and palate were successfully repaired by Danielle’s care team. The team’s courageous efforts, collaborative spirit, and amazing success also inspired Dale to apply for a job at Seattle Children’s, where he works today.

The Landis’ story is told in a compelling photo slideshow narrated by Heather, using entries from her months of blog posts and photos taken by the family during their difficult – but ultimately successful – journey.  

If you’d like to arrange an interview with Heather or Dale Landis, or a member of Danielle’s care team, please contact Children’s PR team at 206-987-4500 or at press@seattlechildrens.org.

Five Days, Four Heart Transplants

Heart transplant recipients (clockwise, from top left): Brooke Naab, Hannah Campbell, Batul Al-Salami and AJ Baird.

In one five-day span this September, four patients – one teenager and three critically ill infants – received life-saving heart transplants at Seattle Children’s.

For four families, the week meant the end of an agonizing wait and the start of a new life.

To perform four transplants in five days is very unusual, says Dr. Lester Permut, heart surgeon and interim chief of Cardiothoracic Surgery at Seattle Children’s. “But these are situations we train for.”

The first notification came at the end of a busy Friday: A donor heart was available for 6-month-old AJ Baird, who had spent half his short life waiting for a heart in Children’s Cardiac Intensive Care Unit (CICU).

A team from Children’s – two heart surgeons and a transplant nurse – set out immediately to get the donor heart while a team led by Dr. Permut and another heart surgeon, Dr. Michael McMullan, readied AJ at Children’s. The transplant surgery started early on Saturday, Sept. 22.

The team was finishing AJ’s surgery when the beeper went off again: a heart was available for 14-year-old Batul Al-Salami, who has been followed by the Heart Center since birth.

Then it happened again, and again, until Wednesday, Sept. 26. By then, the team had completed a total of four heart transplants – more than Children’s had ever done in a single week.

The cluster of transplants made for an exhilarating week.

“When a heart comes up for one of our patients, we’re excited about it and the energy from that sustains us,” says Dr. Permut, who traded the role of lead and assistant surgeon with Dr. McMullan for all four surgeries.

“It was a tour de force for a big group of people,” adds Dr. McMullan. “It took an incredible team and a very good system to pull this off.”

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Seattle Children’s Cancer Patient Presents “Haunting: A Head” – A Halloween Video

10-year-old Jenna Gibson, a Maple Valley, Wash. resident, has been a patient at Seattle Children’s since she was initially diagnosed with acute myeloid leukemia earlier this year.

While staying at the hospital’s cancer care inpatient unit recently, she had the idea to create for her friends and family a video entitled: “Haunting: A Head” – all in the spirit of Halloween fun.

In the video, Jenna, hidden beneath a magical hospital robe that makes everything but her head invisible, can be seen on a spooky hijinks across the floor.

“I wanted to show some of the things that were frustrating but kind of funny about being in the hospital,” said Jenna. “And I wanted to use only my head because it seemed mysterious.”

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