Patient Stories

All Articles in the Category ‘Patient Stories’

Born with Bladder Outside His Body, Little Boy Helps Others with Rare Condition

Mick as baby - black and whiteWhen Mick Hullinger was born, the atmosphere in the birthing room was not what Leah Hullinger, a first time mother, had envisioned. Although all the ultrasounds had come back normal, as soon as Hullinger’s baby was placed on her chest, she realized something was wrong. Mick was born with bladder exstrophy, in which the bladder doesn’t grow correctly and sticks outside the abdomen, a rare disorder that happens in about 1 in 30,000 babies.

Mick was whisked away by ambulance to a specialty hospital in Salt Lake City, where the family lived.

“It was a whirlwind,” said Hullinger. “I checked out of the hospital only 12 hours after giving birth. I needed to be by his side. I never pictured this would happen; it’s not what you imagine when you’re having a baby.” Read full post »

Preserving Hope for Young Cancer Patients to Have Families in the Future

Shannon Keating had to think about fertility preservation before she began treatment for Hodgkin lymphoma.

Family planning is not the first thing a young, newly diagnosed cancer patient might think about. But for adolescents and young adults facing cancer treatment that could leave them infertile, preserving the ability to have babies should be part of the conversation at the doctor’s office.

A new study published today in Cancer and led by Dr. Margarett Shnorhavorian, a pediatric urologist and researcher at the Seattle Children’s Research Institute Center for Clinical and Translational Research, found a need for increased awareness of fertility preservation for young cancer patients. The study was based on 459 adolescents and young adults who were diagnosed with cancer in 2007 or 2008. The patients were aged 15 to 39 years when diagnosed with germ cell tumor, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia, or sarcoma. Read full post »

Team Work and Unique Drug Protocol Help Aaden Beat the Odds

Aaden Adams with his parents, Cheree and Andrew Adams

Aaden Adams with his parents, Cheree and Andrew Adams

Aaden Adams remembers waking up in his room in the Cardiac Intensive Care Unit (CICU) at Seattle Children’s Hospital and asking for red Popsicles.

“Everybody wanted me to talk and I wanted a red Popsicle,” said the precocious 6-year-old with a face full of freckles. “So I asked for Popsicles. Do you remember that, Mom?”

“Yes, we remember that well,” answered Aaden’s mom, Cheree Adams. “That was a good day. That was the day we knew that you were on the right path. We knew that you were coming back to us.”

Just two weeks prior, Aaden, who was born with a congenital heart defect, was so near death that his parents were preparing themselves for the reality that he might not make it out of the hospital. It was a situation they had not even considered.

“He came here for a pretty minor procedure,” said Andrew Adams, Aaden’s father. “He was supposed to be in and out of the operating room, but then his body just shut down. His heart wouldn’t restart.”
Dr. Erin Albers, Aaden’s attending cardiologist, said the complication was so unusual that no one on the care team had seen it before. Read full post »

Lactation Consultants Help New Moms When They Need It Most

Juliette, who was too sick to nurse, was still able to get breast milk from her mom, Amanda, with the help of Seattle Children's lactation consultants.

Juliette (right), who was too sick to nurse, was still able to get breast milk from her mom, Amanda, with the help of Seattle Children’s lactation consultants.

Everything went perfectly when Amanda Erickson’s first baby was born. Bennet arrived right on time on March 11, 2012, healthy and eager to nurse.

Exactly two years later – on March 11, 2014 – Bennet’s sister, Juliette, came into the world. This time, says Erickson, “it was an adventure birth.”

In other words, nothing went as planned.

Juliette had been diagnosed before birth with a serious heart problem, and Erickson planned to deliver at the University of Washington Medical Center so her baby could get to Seattle Children’s right away.

“We knew she wouldn’t be able to breathe on her own,” says Amanda. Read full post »

Smaller Artificial Heart Valve Saves Sadie’s Life; Offers Promise for Kids Everywhere

Lee'or, Sadie and Wendy Rutenberg

Lee’or, Sadie and Wendy Rutenberg

Lee’or and Wendy Rutenberg knew that their baby daughter, Sadie, was going to be born with heart problems. Ultrasounds showed that the walls between her heart’s atria and ventricles were not forming correctly. But they didn’t think it would be a problem for Sadie right away.

“Most children with conditions like Sadie’s don’t need surgery until they are 2 or 3 years old. We thought we’d have two or three years of relatively normal life before we’d have to do all of this,” Lee’or Rutenberg said as he gestured toward his daughter’s bed at Seattle Children’s Hospital.

Unfortunately for the Rutenbergs, Sadie’s heart problems were more complex than expected. The only option for her was a type of pediatric heart valve that is currently in clinical trial. Sadie would become the first child in the U.S. to receive the valve as part of the HALO U.S. IDE Trial, which is testing the safety and efficiency of the St. Jude Medical Masters HPTM Series 15mm mechanical heart valve. Read full post »

One Family’s Journey Across the Country to Treat Daughter’s Epilepsy

This week, in honor of Father’s Day, we’re sharing the story about James Marvin and his family’s incredible journey to find treatment for their daughter’s epilepsy.

Marvin family Newport RI Aug 2005

The Marvin family

Imagine living every day of your life waiting for your child to have their next seizure. This is often the reality for parents of children with intractable epilepsy – a chronic form of epilepsy that can’t be controlled by medications alone. Every moment is plagued by uncertainty, and the world quickly becomes a place filled with barriers where hope and opportunity used to be.

This scenario is something with which James Marvin and his wife Joana are all too familiar. When their daughter, Charlotte, was diagnosed with epilepsy after having her first seizure at just 14 months old, this became their family’s world.

“We called it ‘the antagonist,’” said Marvin. “Charlotte would usually have a seizure every couple of days, but any time she was stressed, tired or sick, the antagonist would come out. It was so difficult to live our lives just waiting for the other shoe to drop, and there was no end in sight.”

That was, until five years later when they traveled 3,000 miles from their home in Virginia, to seek treatment at Seattle Children’s Hospital that held the promise of ending Charlotte’s seizures, hopefully for good.

Read full post »

Teen Wishes for a Heart for His 16th Birthday

Jacob Riley Smith - Web

Jacob Smith, 16, from Mukilteo, Wash.

Most 16-year-olds wish for a car for their birthday, but not Jacob Smith from Mukilteo, Wash. Jacob‘s wish was for a heart. Fortunately, he didn’t have to wait long for his wish to come true. He received a call from his doctors on Saturday, June 6, 2015. They had a match! He would receive a heart before he turned 16.

“I couldn’t have ever imagined that this would be our story, but here we are,” said Angela Smith, Jacob’s mom. “It was on a Thursday when Jacob got sick, a Thursday when he had open heart surgery, a Thursday when he was put on the transplant list, and now on Thursday, June 18, he’ll celebrate his birthday with a new heart.” Read full post »

The Reality of Pediatric Stroke

Being the mother of a pediatric stroke survivor, I am thrilled that this month marks Pediatric Stroke Awareness Month in Washington state. As a nation, we have supported efforts of increasing awareness of stroke in general, however, pediatric stroke has received little awareness or research to date. Here we share our story in hopes of increasing awareness among the community, advocating for more resources and support for children and their families who have been impacted by stroke, and to provide hope to families starting out on this journey that our children can overcome vast obstacles.

Addison Hyatt survived a pediatric stroke at birth

Addison Hyatt survived a pediatric stroke at birth

Contrary to what most people believe, stroke is a potential risk for everyone, including children and teens. Stroke occurs at the highest rate in the first year of life, and is most common between the 28th week of pregnancy up until one month after birth. Approximately one in 1,600 to 4,000 newborns have a stroke each year. For children age 1 to 18, stroke occurs in 11 out of 100,000 kids and teens. I share this information not to create alarm, but rather to spread awareness. Pediatric stroke is often thought of as extremely rare; sadly it is not. I know far too well that it’s real, and we encourage other parents to understand its signs, symptoms and treatment options. Read full post »

Clinical Trial Offers Only Treatment Option for Girl with Hepatitis B

Esmee and Willa

Esmee (left) and Willa (right) pose for a photo.

A clinical trial was the only hope for Esmee, a little girl adopted from China. Read below about her story and the innovative research being done at Seattle Children’s Hospital and Research Institute to help those who would otherwise have no treatment option for chronic hepatitis B (HBV).

Renee Jones always wanted a little girl, so when the adoption agency called one day to tell Jones about Esmee and Willa, she was thrilled – two little girls instead of one!

She filed the paperwork for adoption and waited patiently to hear back. Read full post »

Promising Research Trials Find New Combination of Drugs Treat Underlying Cause of Most Common Form of Cystic Fibrosis

Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute and professor at the University of Washington

Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute and professor of Pediatrics at the University of Washington

Results from two phase 3 clinical trials published yesterday in the New England Journal of Medicine show that a new combination of medications can successfully treat the underlying cause of cystic fibrosis for patients age 12 and older with two copies of the F508del gene mutation – the most common form of the life-threatening, genetic disease found in over half of the cystic fibrosis (CF) population. Approximately 8,500 people in the U.S., and 22,000 people in North America, Europe and Australia, age 12 and older with cystic fibrosis carry this gene mutation.

The international trial, which studied more than 1,000 cystic fibrosis patients age 12 and older, revealed that a combination of the drugs Kalydeco (ivacaftor) and lumacaftor, an experimental drug that has not yet been approved by the Food and Drug Administration (FDA), successfully treated the defective CF protein and improved lung function. The drugs also helped patients achieve a 40 percent reduction in pulmonary exacerbations, the leading cause of death in cystic fibrosis patients. Read full post »