On the Pulse

After doctors found a tumor and cyst in her brain, 13-year-old Emiliah Albanese discovered that channeling her love for drawing was a helpful way to relieve stress and express her feelings.

When she learned her younger cousin would need heart surgery, Emiliah put her artistic skills to work by creating a personalized heart drawing. On social media, her art quickly caught the attention of other families who had children with heart issues. She began receiving hundreds of requests to create personalized “heartwork.”

Emiliah’s striking watercolor-painted drawings often feature children and anatomically correct hearts with thoughtful, customized details. In one picture, a girl waters colorful flowers that blossom from a heart. In another, a boy pulls a wagon carrying a heart. Through her “heartwork,” Emiliah hopes to help brighten what can be a difficult time for children and their families.

“I feel really happy when I’m drawing for others, especially knowing that the drawings seem to bring joy to other kids and their families,” said Emiliah. Read full post »

Scientists at Seattle Children’s Research Institute are investigating how an infant’s microbiome may offer protection from HIV infection. (Photo by Getty Images)

Every year, over 1.2 million people continue to be infected by HIV. Of these, about 160,000 are infants that contract the virus from their mother. Without treatment, a third of these infants die by their first birthday, and half of them do not make it to age 2.

Thanks to programs that identify and treat HIV-infected mothers and children, the number of deaths in children has decreased nearly 50% since 2010. Despite this success, HIV infections in infants remain persistent primarily because not all mothers know if they are infected or, for a variety of reasons, are unable to adhere to taking the antiretroviral medications they need to prevent transmission.

To close the gap, scientists at Seattle Children’s Research Institute are looking for new clues in an important indicator of overall infant health – a baby’s developing immune system and microbiome. Ongoing research not only examines how an infant’s microbiome can evolve to help protect against HIV infection, but also what factors, such as diet, alter an infant’s susceptibility when exposed to HIV through their mother’s breast milk. Read full post »

A new study finds that any amount of smoking during pregnancy – even just one cigarette a day – doubles the risk of an infant dying from sudden unexpected infant death. (Photo by Getty Images)

The first findings to result from a collaboration between Seattle Children’s Research Institute and Microsoft data scientists provides expecting mothers new information about how smoking before and during pregnancy contributes to the risk of an infant dying suddenly and unexpectedly before their first birthday.

According to the study published in Pediatrics, any amount of smoking during pregnancy – even just one cigarette a day – doubles the risk of an infant dying from sudden unexpected infant death (SUID). For women who smoked an average of 1-20 cigarettes a day, the odds of SUID increased by 0.07 with each additional cigarette smoked.

“With this information, doctors can better counsel pregnant women about their smoking habits, knowing that the number of cigarettes smoked daily during pregnancy significantly impacts the risk for SUID,” said Dr. Tatiana Anderson, a researcher in Seattle Children’s Center for Integrative Brain Research and lead author on the study. “Similar to public health campaigns that educated parents about the importance of infant sleep position, leading to a 50% decrease in sudden infant death syndrome (SIDS) rates, we hope advising women about this risk will result in less babies dying from these tragic causes.”

If no women smoked during pregnancy, Anderson and her co-authors estimate that 800 of the approximately 3,700 deaths from SUID every year in the U.S. could be prevented, lowering current SUID rates by 22%. Read full post »

Benjamin (Ben) Bronske recently said goodbye to the legion of Stormtroopers who have been with him since his first small steps. For many parents, a child’s growth is charted by a simple mark etched on a door frame. For Ben, his growth will be commemorated by a different kind of memento, one of resin and carbon fiber.

Ben recently outgrew his first prosthesis and welcomed a new gaggle of fictional Star Wars characters to walk by his side – porgs. Saying farewell to Ben’s first prosthesis wasn’t easy for Sarah Bronske, Ben’s mother. It signified a major milestone. Read full post »

Shanahan “Shanny” Dameral, 19, recently participated in a clinical trial at Seattle Children’s investigating a new drug for children with treatment-resistant epilepsy.

For the first time in his life, Shanahan “Shanny” Dameral, 19, has a girlfriend. Soon, he’ll be graduating with a high school diploma and looking for his first job on the Kitsap Peninsula.

What seems routine for many is a big deal for Dameral and other children living with treatment-resistant or intractable epilepsy. For reasons largely unknown, seizures in this subset of children persist long past their discovery in early childhood despite being treated with multiple medications and undergoing surgery to remove the affected parts of their brain.

Diagnosed with epilepsy at age 5, life for Dameral has always come with seizures attached. When his seizures returned after a second brain surgery shortly after his 16th birthday, his mom Linley Allen, hoped for a medical breakthrough.

“We needed to find something else since another surgery was out of the question,” Allen said. “We had heard about a drug being studied for a more severe seizure condition. I kept holding onto hope that it might be expanded to treat Shanny’s type of seizures because it was all we had at the time.”

Then last year, Dameral’s longtime neurologist at Seattle Children’s, Dr. Russell Saneto, told the family about a phase 1 trial of an experimental therapy known as Nab-rapamycin (ABI-009) for patients with intractable epilepsy at Seattle Children’s.

“Dr. Saneto has always pushed for better ways to treat Shanny’s seizures, and even after he explained that this trial was early in the research process, Shanny popped right up and asked, ‘When do we start?’” said Allen. “I was like, ‘Shanny, this is going to be a couple of years out,’ so we were both surprised when Dr. Saneto said, ‘No, you can start next month.’” Read full post »

Malia Juarez and her husband were over the moon with excitement when they found out they were pregnant. Their journey to get there hadn’t been an easy one. Juarez suffered from endometriosis, and so heartbreaking words like infertility had been discussed.

They dreamed of the pitter patter of little feet running through their home, and of holding small hands as they embarked on adventures.

They dreamed of that future, until one day, their dream came true.

“She’s a miracle,” said Juarez. Read full post »

Ruth, 3, was diagnosed with a rare gastrointestinal disorder. Despite having a blind mother and partially sighted father, Ruth’s parents proved it was possible to learn the complicated skills that were required to manage her health at home.

For many parents, caring for a child with a serious medical condition can have its challenges.

For Hailee and Ray Hughes, the challenge of caring for their 3-year-old daughter, Ruth, who has a rare gastrointestinal disorder, meant learning complicated skills like how to maintain Ruth’s nutritional needs intravenously through a tube connected to her chest.

“It definitely wasn’t easy at first,” said Hughes. “There was a lot to learn and we wanted to safely care for our daughter in the best way we could.”

Learning the proper techniques involved in Ruth’s care was one thing, but doing it with partial to no vision was another.

Read full post »

Radhika Poppy Ennis is an energetic 4-year-old who loves to laugh, play and dance. But until recently, she was unable to stand or walk on her own.

When Leslie and Jeremy Ennis adopted Radhika from India last year, she had extensive burns on her lower body. She could not straighten or use her left knee and moved around with her arms, dragging her left leg. The family was referred to Dr. Vincent Mosca, an orthopedic surgeon and chief of foot and limb deformities within the Orthopedics and Sports Medicine department at Seattle Children’s. The only option was to amputate Radhika’s lower leg, so that she could get a prosthesis.

In the past year, Radhika has not only learned a new language and way of life. She also underwent surgery and received a shiny blue prosthetic leg.

“Radhika is really determined and resilient,” said Leslie. “She has been through a lot, but from the very beginning she’s been really happy and up for adventure. We were excited for her to be able to run, dance, play with other kids and just to be off the floor and be seen. She loves people and wants to be in the mix so badly.” Read full post »

Danica Taylor, 3, has undergone treatment at Seattle Children’s for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT.

Recalling the treatments her daughter has had over the past year for an aggressive, very rare type of brain tumor known as atypical teratoid rhabdoid tumor, or ATRT, Audrey Taylor says it’s like watching a game where your favorite sports team keeps losing and then regaining the lead.

“There are so many times when you feel like you totally got this, followed by moments where you’re not really sure what’s going to happen next,” she said.

Diagnosed with ATRT at 21 months old, Danica Taylor, now 3, has endured multiple rounds of chemotherapy, stem cell transplants, two brain surgeries, laser ablation and proton beam radiation therapy to try to stop the fast-growing tumor.

Danica remained strong through it all.

“She’s just the bravest and toughest kid I know,” Taylor said. “Whenever I have to do something hard, I summon my inner Danica.” Read full post »

Amani Jackson and her identical twin sister, Amira, possess a rare bond that began in their mother’s womb.

Up until the moment they were born, grasping on to one another, their bond remained unbroken.

It wasn’t until surgeons noticed one of them wasn’t quite like the other, that they needed to part ways.

“Although they were both premature, Amira came out healthy as can be,” said their mother, Stranje Pittman. “However, as soon as the doctor saw Amani, they knew something was wrong. Before I knew it, she was rushed out of the operating room and immediately taken to Seattle Children’s.”

Read full post »