Patient Stories

Dr. Katie Williams, a pediatrician and urgent care specialist at Seattle Children’s Bellevue Clinic and Surgery Center, lived every parent’s worst nightmare when her 1-month-old son turned gravely ill one Saturday evening in January. Here, Williams shares how her infant escaped the grip of death — and how she gained a new level of gratitude — thanks to her colleagues’ expertise in pediatric life support.

Dr. Katie Williams with her son, Grayson

The Saturday that is forever burned in my memory started out typically. My husband David DeTerra and I took our three kids — 4-year-old Evan and 1-month-old twins Elisabeth and Grayson — to an afternoon birthday party for a friend. On the way home, we stopped for takeout and looked forward to a relaxing evening at home. I remember sitting in the car thinking how glad I was that the twins had reached the 30-day mark, because that’s the point where infants are less likely to get serious infections.

What happened next came totally out of the blue.

Grayson started breathing funny and he had this strange rhythmic cry. I figured he was hungry and wanted out of his car seat to nurse. When we got home, David noticed he felt cool and clammy and his face looked pale. We both tried to feed him, but he wouldn’t eat. His eyes, normally so alert, couldn’t connect with us at all. When his tiny body went limp, we frantically called 9-1-1. Read full post »

Ada Zeitz, 2, tries to have some fun at her Kidney Stones Clinic visit while her mom and dad meet with the multidisciplinary team.

When you hear the term, “kidney stones,” you probably wouldn’t think a blue-eyed, blond-haired 2-year-old is someone who suffers from the painful condition. After all, kidney stones are most common in adults age 40 and older.

Yet over the past decade, prevalence of kidney stones in kids has increased, says Dr. Joel Hernandez, nephrologist at Seattle Children’s Hospital.

It’s this increase that prompted creation of a new clinic at Seattle Children’s – one that exists solely to diagnose and treat kids with kidney stones. Read full post »

Erik Twede was just 3 years old when he was diagnosed with Duchenne muscular dystrophy, a fatal genetic disorder that causes progressive muscle weakness.

The day doctors told Karen Twede her son Erik had Duchenne muscular dystrophy, she went straight home and searched for the mysterious illness in her medical dictionary. She read: “A progressive muscle disease in which there is gradual weakening and wasting of the muscles. There is no cure.”

“My breath caught in my throat,” Twede said. “It was a terrifying reality to accept.”

Thankfully, several clinical research studies being offered at Seattle Children’s Research Institute are giving hope to parents facing the same devastating diagnosis.

The studies, led by Dr. Susan Apkon, director, Seattle Children’s Department of Rehabilitation Medicine and an investigator in the research institute’s Center for Clinical and Translational Research, offer promise to better treat, or even cure, Duchenne, through the use of new therapies with fewer side effects.

“When I meet with patients with Duchenne and their families today, we have a very different conversation than we might have had 10 years ago,” Apkon said. “Today I ask my patients ‘What do you want to be when you grow up?’ because I believe in their future. I’ve been able to look ahead and see the research being done nationally and internationally and there seem to be treatments on the horizon.” Read full post »

Baby Genesis before her surgeries

Discovering your child has a craniofacial condition can be a stressful time filled with questions and uncertainties. Seattle Children’s Craniofacial Center aims to not only keep the patient’s needs in mind, but also the needs of the entire family. Below are the stories of two unique craniofacial journeys and how the patients and their families received support throughout the process.

Genesis and family find comfort after early diagnosis

Genesis Murillo is a fun-loving, 4-year-old who was born with bilateral cleft lip and palate – a birth defect that occurs when parts of the lip and roof of the mouth don’t fuse together during pregnancy. Cleft lip and palate affects one in 700 infants worldwide, and is one of the most common birth defects. It can be caused by several factors, including genetic abnormalities, but there is no single cause.

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Shortly after Julie Wyatt delivered baby Nolan Wyatt on December 15, 2013 in Olympia, she received some startling news. Nolan was diagnosed with a congenital diaphragmatic hernia (CDH) – a hole in his diaphragm – a potentially life-threatening condition. It was something they didn’t see coming. Typically, CDH can be diagnosed before birth using an ultrasound, but Nolan was a rare exception. Read full post »

On Sunday, Briella Caniparoli celebrated her first birthday, a miraculous feat given the struggles she’s had to overcome. This is Briella’s story, from a devastating heart diagnosis before birth to hope for a bright future.

Briella with Dr. Agustin Rubio at Seattle Children’s Hospital

Christina Caniparoli and her husband, Mark, came to Christina’s 20-week ultrasound at a local hospital with no expectations except to learn the sex of their second child. Four hours later, the couple left with very different news.

“During the appointment they kept leaving the room and coming back, then leaving again,” Christina Caniparoli said. “Something was definitely not right.”

Doctors told the Caniparolis that their baby had significant heart defects, and most likely had Down’s syndrome. The parents-to-be were presented with the option to terminate the pregnancy.

“It just wasn’t an option for us,” Christina Caniparoli said. “I wasn’t ready to just accept what they were saying, but even if they were right, we would deal with whatever it was.”

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The following is part 1 of a two-part series on ECPR, a combination of CPR and ECMO offered at Seattle Children’s Hospital to save the most fragile patients’ lives. Here, we tell Hannah Mae Campbell’s story and how ECPR saved her life. In part 2, we’ll discuss how Seattle Children’s has spearheaded a first-of-its-kind ECPR simulation program this year to improve the process that allows the hospital to save patients in a time of crisis.

Today, Sept. 24, marks a remarkable milestone for the Campbell family – the end of a long, tumultuous journey that began the day their daughter, Hannah Mae Campbell, was born. It’s the anniversary of the day Hannah received a new heart, and a chance at life two years ago.

Hannah’s journey begins

When Jennifer Campbell of Everett, Wash., was pregnant with Hannah she prepared as much as she could and followed all the prenatal guidelines to a tee. This was her first baby and she, as all parents do, wanted her little girl to be perfect.

Once Hannah was born on May 18, 2012, Jennifer and her husband Jon remember how the joy of seeing their little girl for the first time quickly turned into terror. Hannah was lethargic, her hands and feet were blue and her heart was rapidly pumping at 253 beats per minute. The room at the local birthing center quickly filled with doctors and then Hannah was taken to the neonatal intensive care unit (NICU). Twelve hours later, Hannah was transferred by ambulance to Seattle Children’s Hospital.

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Shannon Keating, 16, before cancer diagnosis.

Shannon Keating always imagined that she would be a mom some day, but she didn’t expect she’d be treated at a fertility clinic at age 17. Shannon was diagnosed with Hodgkin Lymphoma as a high school sophomore, was successfully treated and then relapsed nine months later. As she prepared to fight for her life a second time, experts at Seattle Children’s Hospital helped her preserve her dream of being a parent one day.

A devastating diagnosis

Shannon was first diagnosed with Hodgkin Lymphoma in March 2013, after she discovered a lump on her neck. The treatment was six months of less-aggressive chemotherapy that oncologists did not believe would affect her fertility.

“I was relived that this therapy was less toxic, but when it was finished I didn’t feel like I was done,” Shannon said. “I had this feeling hanging over my head. I believed my cancer would come back.”

Unfortunately, Shannon was right. That December, her cancer relapsed. Facing a life-threatening illness once again, she learned her second round of treatment would be more aggressive and could cause infertility. Doctors offered her the opportunity to freeze her eggs so that she might later become pregnant using in-vitro fertilization, but Shannon was initially overwhelmed. Read full post »

Brenda Senger and her daughter Tessa.

Tessa Senger, of Spokane, Wash., appeared to be a perfectly healthy child until she began having seizures at age 4. Her mother, Brenda Senger, took Tessa to a local neurologist, who diagnosed her with epilepsy. But the treatments prescribed to Tessa did not lessen her seizures, which were occurring up to 50 times each day. Tessa grew weaker and began losing weight.

“I felt helpless,” her mom said. “I just wanted her seizures to stop and for her to start growing again.”

Eventually, Tessa was referred to Seattle Children’s Hospital, where Dr. Russell Saneto, director of the Mitochondrial Medicine and Metabolism Care Team at Seattle Children’s and an investigator at Seattle Children’s Research Institute’s Center for Developmental Therapeutics, diagnosed her with a mitochondrial disease. Saneto prescribed a vitamin cocktail and seizure medications that changed Tessa’s life. The tiny girl, who weighed just 35 pounds until age 6, finally started gaining weight and her seizures stopped almost completely. Tessa is now 15 years old and has only had two seizures since second grade. She is healthy enough to begin reducing her seizure medications.

“Tessa is just thriving year after year,” Senger said. “I am thankful every day that we found Dr. Saneto and the support of Seattle Children’s Hospital.”

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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 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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