Patient Stories

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 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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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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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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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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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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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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Northwest Film Forum’s 8^th 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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If 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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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.

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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