Patient Stories

All Articles in the Category ‘Patient Stories’

One Enzyme Short: How a Clinical Trial Made All the Difference for a Young Boy with a Metabolic Disease

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Sutton Piper, age 3

Sutton Piper, 3, was born with a metabolic disorder that made his muscles too weak for crawling, walking and talking. After being referred to Dr. Sihoun Hahn, a biochemical geneticist at Seattle Children’s, Sutton is bouncing on his mini-trampoline and chatting up a storm. 

Sutton Piper came into the world on his own terms: nine days late.

At 6 months, he’d made little attempt at rolling over; at 9 months, he showed no interest in sitting up on his own; and, by his first birthday, he wasn’t even trying to crawl. Read full post »

Lung Liquid Similar to One Used in Movie “The Abyss” Saves Infant’s Life, Doctors Encourage FDA Approval of Clinical Trials

Elise Pele had been in labor for hours awaiting the arrival of her baby girl, Tatiana, on the evening of Aug. 29. Elise remembers wanting desperately to hear her baby cry – a sign that everything was ok. But that cry never came. She saw Tatiana for only a few seconds before nurses rushed her to the neonatal intensive care unit (NICU) at a local hospital.

“I instantly knew something wasn’t right and I was terrified,” Elise said. “The doctors told me my baby wasn’t breathing right and had to be transferred to Seattle Children’s.”

Tatiana experienced meconium aspiration syndrome where she inhaled a mixture of meconium (stool) and amniotic fluid during labor due to stress, which obstructed and irritated her airways, leading her down a path where doctors thought she would likely die. Read full post »

Common Tumors, Better Treatments: Researchers Discover Why a Blood Pressure Medication Shrinks Infantile Hemangiomas

Researchers at Seattle Children’s are constantly asking questions and investigating new treatments with the goal of improving care for our patients. Two investigators from Seattle Children’s Research Institute recently came together to determine the best therapy for children suffering from infantile hemangiomas.

A breakthrough treatment

Before she took propranolol, hemangioma tumors covered Shakira Locke's face and neck - and blocked her esophagus and airway. After being treated at age 2, Shakira now breathes and eats normally.

Before she took propranolol, hemangioma tumors covered Shakira Locke’s face and neck – and blocked her esophagus and airway. After being treated at age 2, Shakira now breathes and eats normally.

Right after Lorene Locke gave birth to her daughter Shakira, she noticed what looked like a rash on the newborn’s face. Three weeks later, doctors found an abnormal clump of vessels, called an infantile hemangioma, growing out of control inside Shakira’s throat and on her neck, face and ear, blocking her airway and leaving her gasping for air.

While most hemangiomas go away on their own and don’t cause problems, children like Shakira need multiple surgeries and procedures to remove the growths. Dr. Jonathan Perkins, an otolaryngologist and an investigator at the Center for Clinical and Translational Research at Seattle Children’s Research Institute, has spent years studying hemangiomas in search of a less-invasive approach. When French researchers discovered that a blood pressure medicine called propranolol could shrink away hemangiomas, Perkins found the breakthrough he was waiting for. Read full post »

Families Find Hope in Success of Cancer Immunotherapy

Researchers at Seattle Children’s are sharing their success thus far in treating leukemia using immunotherapy – a technology that uses the body’s own immune system to destroy cancer cells. While scientists are excited about progress of these clinical trials, no one is more grateful for this research than the families of the patients who have benefitted from it.

A tiny girl, a tough decision

Greta Oberhofer with her parents Andy and Maggie and her sister Charlotte.

Greta Oberhofer with her parents Andy and Maggie and her sister Charlotte.

In March of this year, Andy and Maggie Oberhofer, of Portland, Ore., faced the most difficult dilemma of their lives. Their baby daughter, Greta, was dying. She had been diagnosed with acute lymphoblastic leukemia when she was just 3 months old and standard treatments were not working. Her family prepared for the worst.

“Greta had barely survived chemotherapy and a transplant,” Andy Oberhofer said. “We didn’t want her to suffer any more if she couldn’t be cured. We found ourselves considering end-of-life care for our 1-year-old daughter.”

But then, Greta’s family found hope. Greta qualified for a cancer immunotherapy trial at Seattle Children’s Hospital designed to treat leukemia patients who have relapsed after a transplant. This innovative technology reprograms the body’s T cells and reintroduces them into the immune system, where they hunt down and destroy cancer cells.

“Immunotherapy just made sense to us,” said Oberhofer. “We believed it could work.” Read full post »

Is Thank You Enough?

You may remember Kat Tiscornia from September of last year when she shared her experience of battling Ewing sarcoma and becoming “Titanium Girl.” Kat, now a sophomore at Mercer Island High School, asked On the Pulse if she could share an important message with those who cared for her at Seattle Children’s. We think you’ll enjoy reading it as much as we did.

Thank you. It’s just two simple words. In some languages it’s just one, gracias or merci for example. I was brought up to say thank you all the time. Thank you to my teachers, my coaches, my bus driver and the store clerk behind the counter. Are these two words really enough though? What if it’s a big thank you? What if the people you want to thank are the reason you are standing here today?

In March 2013 I was diagnosed with Ewing sarcoma, a rare form of bone cancer. I was at Seattle Children’s Hospital when I first met my oncologist, Dr. Doug Hawkins. I will never forget that day. He had to deliver the worst news of my life. However, as he told me that I had a cancerous tumor in my leg, his voice was full of compassion, patience and honesty. He was honest about how hard this journey I was about to embark on was going to be. I remember being very scared that day, but I never felt hopeless. He had a plan for me and I trusted him. Thank you, Dr. Hawkins. Read full post »

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 »