Patient Stories

All Articles in the Category ‘Patient Stories’

The Other Side of the Patient Bed: From Pediatrician to Frightened Parent

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 »

Stones Clinic Helps Counter Rise of Kidney Stones in Kids

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

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 »

Hunting for a Cure: Researcher Brings New Muscular Dystrophy Treatments to Seattle

Erik Twede was just 3 years old when he was diagnosed with

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 »

A Family Approach: The Unique Stories of Two Craniofacial Patients

Baby Genesis before her surgeries

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.

Read full post »

Life-Threatening Hernia Doesn’t Stop Baby Nolan; Trains for Diaper Dash at Disneyland

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 »

From Devastating Heart Diagnosis to Hopefulness and Joy

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.

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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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Teen Preserves Dreams of Motherhood After Cancer Relapse

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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 »

How Cancer Shaped Heather Into Who She is Today

In honor of Childhood Cancer Awareness Month, 26-year-old Heather Wick talks about having cancer at the age of 18 and how the experience influenced who she is today.

Heather Wick with her son Daniel

Heather Wick with her son, Daniel

Until beginning to write this post, I had never really thought about how generic introductions are. Name, age, job title, where you live, whose wife or mom you are…how much do you share to tell a person who you are? My introduction is fairly typical, Heather Wick, 26 years old, nanny, lives in Monroe, Alan’s wife and Danny’s mom…oh and CANCER SURVIVOR.

At this point in exchanging pleasantries I often get, “Oh my gosh… you had cancer?! You’re so young!” and then I begin to walk my curious new friend through my journey. Why don’t I just leave out the cancer survivor bit and make things quick and simple you ask? Well because I am proud to be a cancer survivor. That title is as much a part of me as my name is. So, new friends, I invite you to walk through a shortened and condensed version of my journey here, on the blog for the hospital that saved my life.

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Seattle Children’s Seeks to Answer Mysteries of Mitochondrial Disease

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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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Seattle Children’s Tackles Tourette’s, OCD with Innovative Therapies

At least 138,000 children in the United States are estimated to have Tourette’s syndrome,  a condition which causes  urges that lead to repeated involuntary movements (motor tics) and sounds (phonic tics).  For decades, research suggested pharmaceutical therapies were the only effective treatments for tics, but clinical psychologist Dr. Geoffrey Wiegand  is having success using a new, innovative behavior intervention to treat tics. Wiegand is also offering highly effective behavior therapy to children with Obsessive Compulsive Disorder (OCD) to help them manage their worries and compulsions.

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Jules Brown’s OCD made her afraid to leave her house. Now that she has has effective treatment, she tries new things like inner tubing.

Meet Jules

Jules Brown appeared to be a happy, healthy child until she was 5 years old, when her parents began noticing odd behaviors. She was constantly changing her clothes out of fear of being dirty and would wash her hands until they bled. It took the family hours to leave the house because Jules was terrified she would have an “accident” and would insist on visiting the bathroom repeatedly. At school, she spent many days in the nurse’s office, afraid of various illnesses or injuries that she did not have.

“As her mom, I wanted to protect her, so we were constantly doing anything we could to reassure her,” Christie Brown said. “But the impulsive behaviors just got worse.” Read full post »