Patient Stories

All Articles in the Category ‘Patient Stories’

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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New Procedure Improves Life for Children with Hydrocephalus

Kristin Crow got a big surprise when her little bundle of joy arrived prematurely while she was visiting family in Texas in November 2011. She gave birth to her son, Skyler Crow, who was born at 28 weeks, weighing just two pounds, seven ounces.

When in utero, Skyler had been diagnosed with ventriculomegaly, or enlarged ventricles in the brain, and he developed hydrocephalus soon after he was born while in the neonatal intensive care unit (NICU) in Texas.

Hydrocephalus is one of the most common congenital conditions in children, affecting 1 in 500 to 1,000 births. It is a condition where cerebrospinal fluid (CSF) doesn’t reabsorb properly in the brain, causing a harmful build-up. This can cause problems with the development and function of a child’s brain, and without treatment, hydrocephalus can be deadly.

The traditional treatment for hydrocephalus is surgery to implant a shunt, or a small tube, that drains spinal fluid from the brain ventricles down to the abdomen where it is absorbed. Doctors told Kristin and her husband that a shunt was their only treatment option.

“I was terrified as shunts come with a lot of risks,” said Kristin. “There’s a high rate of infections, complications and we would be in the NICU for a very long time, possibly more than five months.”

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Life Derailed Facing Cancer as a Teen

In June 2006, just five days before high school graduation, Heather Krich was diagnosed with cancer. She was 18 years old and while all of her friends were about to go off to college and taking senior trips to Mexico and Hawaii, she took a trip to the inpatient clinic at Seattle Children’s Hospital.

“Just as my adult life was supposed to be starting, I was faced with the possibility of life ending,” said Heather. “It was really overwhelming as dealing with cancer just wasn’t what I was supposed to be doing at that time in my life.”

Heather was diagnosed with non-Hodgkin lymphoma. Doctors at a different Seattle area hospital had initially thought her appendix had burst but discovered in surgery that she instead had cancer.

After receiving the alarming diagnosis, one of Heather’s main concerns was attending her high school graduation. Luckily, with a little help, Heather was able to make it.

“I was in a wheelchair and my twin sister pushed me up the ramp onto the stage so that I could accept my diploma,” said Heather. “It wasn’t how I imagined it would be but I was very happy I could be there.”

After graduation, her doctors referred her to Children’s as they determined her cancer would be best treated at pediatric hospital. Research shows that, for certain kinds of cancer, teens and young adults have dramatic improvements in long-term survival when they are treated on pediatric treatment protocols. In fact, when young adults are treated on pediatric protocols, their long-term survival improves by about 25 percent.

Heather spent the next 13 months in treatment at Children’s. In July 2007, she was thrilled when her cancer went into remission and she ended treatment.

Facing the Challenges

In looking back, Heather said there were many challenges in facing cancer as a young adult, from adapting to the physical changes to following all the rules that go along with inpatient treatment. However, at an age when peer support is so important, she said that the biggest challenge was feeling alone and isolated after having her life derailed with the diagnosis.

“It was a rough time already because it was that transition period into adulthood where you don’t really know where you fit in, especially going through cancer, and you have no one to talk to or relate to,” said Heather. “All of my friends were moving on with their life and they couldn’t grasp or understand my situation. Some of my best friends even stopped calling me.”

Now at 24 years old, Heather was excited to reach her five-year cancer free mark which happened in July 2012. But her experience has left its mark and it has inspired her to be a resource and a support for other patients like her.

Finding a Calling to Give Back

About three years after Heather’s treatment ended, Children’s Adolescent and Young Adult (AYA) Oncology Program sought out to create an online resource that would provide education and peer support to teen and young adult patients across the globe. They brought together a group of AYA cancer survivors, including Heather, and created the video series, “Good Times and Bald Times”, to show how a group of teens and young adults talk to one another about coping with cancer.

“It was so much fun to be involved and it is such a great therapy tool for other patients out there,” said Heather. “It was incredibly therapeutic to look into the eyes of someone else that understands your experience and hear that you aren’t the only one that has gone through these struggles.”

Children’s AYA oncology team asked Heather if she would be interested in being a resource for other teen and young adult cancer patients and she happily agreed. She now serves as a mentor for a patient that recently ended her treatment. They get together to share their experiences and Heather offers insight about transitioning into life after cancer.

“Having that mentorship and camaraderie is wonderful,” said Heather. “Transitioning into regular life is very difficult and it’s hard to even know where to begin and how to navigate back to normalcy. It gives so much hope to see someone on the other side, and I am glad I can provide that perspective.”

Feeling like she has found her calling, Heather is now going back to school in February to become a child life specialist who works with teen and young adult cancer patients.

“I feel such a pull to young adult and teen cancer patients and survivors and I would love to be able to give back and offer support,” said Heather. “I feel it is what I am meant to do.”

A Shoulder to Lean On: Children’s AYA Oncology Program

About 70,000 young people in the U.S. aged 15 to 39 are diagnosed with cancer each year. Teens and young adults comprise a significant population of patients receiving cancer treatment at Seattle Children’s. About a fourth of the patients treated in Children’s inpatient unit are age 15 and older.

The difficulty of facing cancer at this age and the need for psychosocial support is something that Dr. Rebecca Johnson, medical director of the Adolescent and Young Adult (AYA) Oncology Program, understands all too well, not only as a doctor but also as a cancer survivor.

“Teens and young adults have a greater reliance on their peer group as they look to one another to see what milestones they should be reaching,” said Dr. Johnson. “Cancer treatment takes them away from their peers, which can be very distressing. It is important to provide our teen and young adult patients with an enhanced package of psychosocial support in order to improve their treatment experience and help them better process what they are going through.”

Dr. Johnson and her team are working to provide innovative programs and resources at Children’s that will improve the lives of adolescent and young adult cancer patients that will provide this much needed support.

In addition to the “Good Times and Bald Times” videos mentioned above, here is a sampling of some of the other programs and resources, many of which have been made possible by Seattle Children’s Guild Association Teen Cancer Fund:

Not Now Program

This May, you might have heard some buzz about a music video on YouTube where patients on Children’s Hematology Oncology floor sang and danced to Kelly Clarkson’s hit song “Stronger.” The video received worldwide attention and it was thanks to 22-year-old patient, Chris Rumble, who made the video as part of Children’s Not Now creative arts program. This was just one example of the work being done within the program.

The aim of Not Now is to help teens and young adults cope with cancer and provide psychosocial support through creative projects and by connecting them with peers. Led by John Blalock, Children’s Hematology Oncology Artist in Residence, the program gives patients a voice in telling their story through a variety of mediums including photography, video and music.

“What is so neat about the program is that it not only lets patients process their own cancer experience in a way that is creative and fun, but their art projects also give them a wonderful way to share their journey with friends and family,” said Dr. Johnson.

Other projects within the Not Now program have included:

Inpatient Gatherings

In order to help provide a peer group for teens and young adults with cancer, Children’s AYA life specialist hosts regular inpatient gatherings where patients can come together to talk, play games and do different activities.

“Teens and young adults use interactions with peers to process and reflect upon their life experiences. We provide sessions where they can come together and see that they are not alone in their experience,” said Dr. Johnson.

With the hospital’s expansion and opening of Building Hope next year, Dr. Johnson and her team also aim to increase the number of inpatient and outpatient psychosocial offerings in the new dedicated floor for AYA patients. In order to connect AYA patients from other hospitals, and inpatients who are in isolation, they are also looking into using video conferencing technology for the sessions.

Look Good Feel Better Classes

In order to improve patients’ self-esteem, Children’s hosts quarterly Look Good Feel Better classes, which are offered through the American Cancer Society. The classes help patients learn beauty techniques to help them manage the appearance-related side effects of cancer treatment.

Patient Advisory Board

Children’s has also created a Patient Advisory Board comprised of AYA cancer survivors who have expressed a desire to give back after their treatment. The group meets and consults with the AYA Oncology Program to offer their perspective on new programs and act as a support for current patients when needed. The group was also instrumental in providing input about the design of the new dedicated AYA floor that will be in Building Hope.

Heather is a part of this group as well and she is happy to be involved. She is also excited to see all of the tools and resources that are becoming available through the AYA Oncology Program.

“I’m so happy that there are so many tools at Children’s directed at teen and young adult cancer patients,” said Heather. “Having those available will help them better cope and get through their treatment with more ease.”