On the Pulse

Mother of Twins with Autism Shares Her Gratitude to Care Team

In honor of Autism Awareness Month, On the Pulse shares a story about a mother with 3-year-old twin daughters who have autism and her showing of gratitude for the relentless care and support that the Seattle Children’s Autism Center staff has provided her family.

Nataly Cuzcueta felt like a proud parent when she witnessed her twin daughters, Kira and Aliya, smile, laugh and walk for the first time.

Seeing them reach these milestones left no doubt in Cuzcueta’s mind that their development was right on track.

However, when her daughters turned 11 months old, everything changed.

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Two Heart Transplants and Three Birthdays Later, Mya is Thriving

After undergoing two heart transplants before she was 4 years old, 13-year-old Mya Garcia (above with her brother Marcel) is thriving today.

Mya Garcia, 13, has three birthdays. The first one celebrates the day she came into the world. The other two commemorate the days she was brought back to life.

When she turns 18 years old, her mother, Jamie Gonzalez, has a special gift for her miraculous daughter – a heartfelt letter to honor a day she was worried may never come. It’s a letter she’s been holding onto since her daughter was just 4 years old. She wrote it after Mya received the ultimate gift – a second heart; a third chance at life.

“I wrote her a letter to open when she turns 18 that shares in detail everything she went through after she was born, so she truly knows how hard she had to fight for her life,” Gonzalez said. “I don’t ever want her to take her precious life for granted.”

In 2006, three weeks before Mya was due to be born, an ultrasound revealed she had a serious congenital heart defect and her heart rate was dropping rapidly. Gonzalez was induced, and soon after Mya arrived, she was transferred to Seattle Children’s neonatal intensive care unit (NICU).

“It was awful and traumatic,” Gonzalez said. “I just remember holding her tiny little hand hoping everything would be ok.” Read full post »


New Guidelines Hope to Increase Family Knowledge of Water Safety

It’s the stuff of nightmares: a young child slips away unnoticed, wanders into a backyard pool and drowns. A teen swimming to a floating dock begins struggling and disappears. News reports of these tragedies and other drowning stories are too common. Drowning is a leading cause of injury death in children. In 2017, almost 1,000 U.S. children and teens died from drowning and 8,700 visited a hospital emergency room because of a drowning event.

The American Academy of Pediatrics (AAP) is taking further action to educate about water safety. They recently revised their policy statement, Prevention of Drowning, to help pediatricians teach families about drowning risk and provide prevention strategies that are tailored to each family.

“We know from data that pediatricians don’t spend much time talking about drowning prevention. They have so much to cover in very limited time with families — development, mental health, school readiness or progress, the list goes on. Drowning kind of falls to the bottom,” said Dr. Linda Quan, co-author of the policy statement, and an emergency physician at Seattle Children’s. “What we wanted to do with this policy is highlight that some families are at higher risk for drowning and we can tailor education to their specific risk.” Read full post »


Ski Day Gives Kids the Opportunity to Hit the Slopes for the First Time

There was one thing that was brighter than 8-year-old Jana Staudenraus’ coral ski jacket and orange helmet as she flew down the mountain at Stevens Pass this weekend on a sit ski: her big smile. As she came to a stop at the bottom of the slope, her family was there cheering, celebrating the first time Jana had ever skied. The exuberant little girl couldn’t wait to do another run. “I want to go again,” she exclaimed. “I want to go fast.”

Another lap down, with her ski instructor tethered behind her, Jana was beaming with joy.

“Did you see me?” Jana asked her mom.

“Yes. You are doing such a great job,” her mother replied.

“I fell once,” Jana said frowning slightly.

“Yes,” her mother said sympathetically. “But just like in life, what do we do when we fall?” she asked warmly. Read full post »


Doctor Creates Virtual Reality Simulation to Save Babies’ Lives

Trainees in Africa participate in a pilot study of a virtual reality simulation that teaches care providers how to care for a newborn unable to breathe on their own.

Wanting to do something different to address the alarmingly high number of newborn deaths in low income countries, Dr. Rachel Umoren, a neonatologist at Seattle Children’s, turned to virtual reality (VR).

As mobile phone-based VR programs became increasingly accessible, Umoren thought the emerging technology could offer a better way to equip health care providers with the skills necessary to save babies’ lives in low- and middle-income countries with high neonatal mortality rates.

Her case was compelling: with mobile VR training, providers could learn and easily maintain new skills at their own convenience, on their own smartphone, and with game-based automated feedback that is ideal for learning. With its on-demand availability, she believed mobile phone-based VR training could effectively translate into clinical practice better than current training methods.

“Mobile technologies are ubiquitous in low and middle income countries, yet they are relatively untested at disseminating health care information or training in these settings,” Umoren said. “I wanted to see how we could apply innovations in virtual reality to address the pressing issue of neonatal mortality.” Read full post »


With Cancer in the Rearview Mirror, Miguel Races Full Speed Ahead

Miguel Navarro is finally getting back to doing what he loves most: driving.

“Driving has always been an escape for me,” said Miguel. “It’s where I feel most at home. When you’re driving, you forget everything else around you.”

Miguel’s family and care team supported him in the grandstands of the speedway. They each adorned a shirt that said, “Miguel’s Pit Crew.”

When he was first diagnosed with cancer, Miguel was told he may never be able to drive again. It was a reality he couldn’t comprehend or accept.

“I knew I’d drive again,” said Miguel. “I always knew I’d get through this.”

He promised himself he’d get behind the wheel again, and recently, he realized that dream in a special way, thanks to Seattle Children’s.

In the grandstands of Pacific Raceways, Miguel’s family, along with his care team, beamed with pride at the sight of Miguel zooming around the race track. Adorning t-shirts that read, “Miguel’s Pit Crew,” they cheered him on. Read full post »


How to Address Sexual Abuse With Children and Teens

With stories of sexual abuse perpetrated by public figures continuing to be in the spotlight, as well as the rise of the #MeToo movement, there is a growing need for parents and caregivers to educate children and teens about the difficult topic of sexual abuse.

According to RAINN (Rape, Abuse & Incest National Network), every 92 seconds a person in the U.S. is sexually assaulted. Every 9 minutes, that victim is a child.

“Before the age of 18, one in every four girls and one in every six boys will be sexually abused,” said Dr. Lynda Lee Carlisle, a psychiatrist and trauma specialist from Seattle Children’s Psychiatry and Behavioral Medicine clinic. “While it can happen to any child, those most vulnerable are intellectually disabled or identify as LGBTQ+.”

Sexual abuse is rarely committed by a stranger. It is often by someone who the child knows and trusts. While some may think sexual abuse only involves physical contact, it can also be done without contact in the form of inappropriate photos or videos, exposure or other behavior.

“We commonly see children abused by a family member,” said Dr. Carole Jenny, child abuse fellowship director of Seattle Children’s Protection Program (SCAN). “It is also more likely to occur in blended families, with the abuser being a step-parent or a parent’s boyfriend or girlfriend.”

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Teen Creates Art for Heart Warriors

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 »


HIV Protection for Infants May Come From Breastfeeding and the Gut

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 »


Smoking During Pregnancy Doubles the Risk of Sudden Unexpected Infant Death, Study Warns

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 »