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Alaska Teen is Climbing to New Heights After Heart Transplant

Just two days before he got sick, Adrian Peterson was practicing martial arts – a typical activity for the active 17-year-old who regularly biked, climbed and hiked. But that all changed in October 2018, when Adrian woke up feeling congested and nauseous.

“That was the only forewarning I got for what was to come,” Adrian said.

At first, doctors in Fairbanks diagnosed Adrian with the flu. However, about two weeks later, doctors at an urgent care center discovered Adrian had something more. He was sent to an emergency room with acute heart failure.

“My next memory was waking up while being toted over to an ambulance. I was told that we had to fly to Seattle Children’s,” Adrian said. “I fell asleep on the flight, and the next thing I knew I was in Seattle with an IV line in my neck.”

Adrian was diagnosed with dilated cardiomyopathy, which is when the heart is severely weakened and it becomes enlarged.

“It was completely unexpected,” Adrian said. “All I knew was that I wanted to be healthy again.” Read full post »

Scientists Find Clues to Rare Mutation Hours After Toddler’s Brain Surgery

At 5 months old, Tyler Cassinelli, now 3, was battling both liver cancer and intractable epilepsy. When he was at Seattle Children’s preparing to undergo cancer treatment, Tyler had a seizure that stopped his breathing.

“It was one of the scariest moments of my life,” said Jane Cassinelli, Tyler’s mother. “We could see his stats on the monitor dropping, and doctors came rushing in.”

Doctors quickly intubated and revived Tyler. Five months later, his cancer was in remission. However, he continued to have unpredictable and life-threatening seizures that multiple medications failed to stop.

Genetic testing revealed that Tyler had a mutation of the HCN1 gene. Children with this rare abnormality are at risk for traumatic epilepsies, said Dr. Nino Ramirez, director of the Center for Integrative Brain Research.

“It was difficult to hear that Tyler was expected to have a lifetime of hard-to-control seizures due to a genetic disorder,” said Cassinelli.

In addition to the mutation, Tyler had a brain malformation called focal cortical dysplasia, a common cause of intractable epilepsy. Testing showed Tyler’s seizures were coming from an area on the left side of his brain. Brain surgery to address the problematic lesion could help, and what’s more, his brain could also enable researchers to unlock some of the mysteries of the genetic mutation.

“Tyler’s situation was unique and extremely desperate,” said Ramirez. “There is great clinical interest worldwide in better understanding the HCN1 mutation, and Tyler’s brain could provide a rare window into its role in epilepsy.” Read full post »

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 »

With New Leg, Radhika Walks For First Time

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 »

Study Could Help Predict Aneurysm Risk for Kids with Kawasaki Disease

In honor of National Kawasaki Disease Awareness Day on January 26, we are sharing the story of Olivia, a 9-year-old who lives with the disease. Research at Seattle Children’s aims to improve life for children with this condition who are at risk for aneurysms.

When Olivia Nelson was 3 years old, her parents noticed that she had a fever that wouldn’t get better. They brought her to a nearby hospital, where she spent about two weeks being screened for diseases. As doctors tried to find a diagnosis, a lymph node on Olivia’s neck became swollen. Alarmed and wanting an answer, the Nelsons asked to transfer to Seattle Children’s.

“It was very frustrating,” said Olivia’s father, Trevor Nelson. “She was in the hospital for two weeks in and out, and they still couldn’t figure out what was happening.”

Soon after the family arrived at the hospital, Olivia was diagnosed with Kawasaki disease, a serious inflammatory condition affecting the eyes, lips, hands and coronary arteries. The disease affects about 7,000 children in the U.S. each year. Though the family was relieved to have a correct diagnosis, they learned Olivia had developed coronary aneurysms, the enlargement of her coronary arteries due to the persistent inflammation.

A new study funded by the National Institutes of Health (NIH) could improve the quality of life for children with Kawasaki disease at risk of developing coronary artery aneurysms like Olivia did. Dr. Michael Portman, a cardiologist at Seattle Children’s Heart Center Kawasaki Disease Clinic and researcher at Seattle Children’s Research Institute, hopes to find genetic biomarkers that will predict which patients will not respond to the standard treatment and thus have a higher risk of developing coronary artery problems.

“Olivia will have lifelong issues related to her heart and coronary arteries,” said Portman. “It’s a shame that a 9-year-old has severe heart disease that might have been prevented had we had ways to quickly diagnose and treat her disease effectively.” Read full post »

After Life-Saving Surgery, Summer Overcomes the Odds

When Cassie Fannin and her husband arrived at her 19-week ultrasound, the newly married couple was excited to learn more about their child.  However, the first-time parents’ joy quickly turned to uncertainty when the ultrasound showed their baby’s stomach in her chest due to a life-threatening condition.

Fannin learned that her daughter, Summer, would be born with a congenital diaphragmatic hernia (CDH). Summer had a hole in the left side of her diaphragm that allowed her stomach, intestines and a portion of her liver to slip through into her chest cavity. This prevented her left lung from developing normally.

“To say it was a shock is an understatement,” said Fannin. “We went from being ecstatic about finding out we were having a girl to absolutely devastated in a matter of seconds. I left that day a completely different person. My sadness slowly turned into anger and resentment as I thought, ‘Why us? Why our baby?’”

Doctors referred the family to Seattle Children’s Prenatal Diagnosis and Treatment Program since Fannin’s baby would need surgery after birth, if she survived. The couple met Dr. Kimberly Riehle, an attending surgeon at Seattle Children’s, when Fannin was about 22 weeks along.

“My husband and I were completely lost and overwhelmed,” said Fannin. “Dr. Riehle helped ease our troubled minds during a really uncertain time. My feelings of bitterness and sorrow slowly started to melt away as I came to terms with the diagnosis and the realization that we were no different than anyone else getting a life-changing diagnosis, and I just focused on my excitement to meet her.” Read full post »

Teen With Melanoma Gets Back to Doing What She Loves

Ruth Garcia, 17, received treatment from Seattle Children’s for her melanoma.

During seventh-grade gym class, Ruth Garcia remembers a friend pointing out a black mole she had on her left knee. Ruth didn’t think much about it until two years ago, when she began to feel pain in her knee and noticed that the mole had grown and changed colors to gray and red.

“That’s when I started to worry more,” said Ruth, now 17.

In spring 2016, Ruth’s mother took her to see her primary care provider near the family’s home in Walla Walla, Washington. They did a biopsy on the mole, and she was diagnosed with spitzoid melanoma. Ruth was referred to Seattle Children’s Cancer and Blood Disorders Center.

A child born in the U.S. has about a one in 40 chance of developing melanoma during their lifetime. Seattle Children’s sees about six children a year who were either misclassified with melanoma or have spitzoid melanoma. The cause of spitzoid melanoma is unknown.

“I was surprised,” said Ruth. “I never thought something like that would happen to me.” Read full post »

Patients Share Their Top Resolutions to Ring in the New Year

With the countdown to the New Year almost here, On the Pulse caught up with a few of the patients who inspired our readers with their stories throughout 2018. Below, they offer their hopes, dreams and goals for the year to come.

A shoulder above his cancer, Miguel sets sights on giving back

Miguel Navarro, 19, is focused on the road ahead after treatment for a rare bone cancer.

In 2018, doctors built a right shoulder for Miguel Navarro, 19, after surgically removing an aggressive type of bone cancer known as osteosarcoma that threatened his life. Miguel spent most of the last semester of his senior year of high school in the hospital going through chemotherapy and intensive rehabilitation to regain the use of his right arm. Now, he’s solely focused on the road ahead – one that includes getting back to a hobby he’s passionate about – driving his stick shift car – and giving back to others.

“My goal for 2019 is to give back to the community that took care of me and supported me during my time of need,” Miguel said. “I’m blessed to be alive. Now, I want to be hope for someone else.” Read full post »

After a Long Journey of Nose Reconstruction, Tristan is Smiling Again

Tristan, 9, recently underwent a three-stage nose reconstruction.

For most of the past year, 9-year-old Tristan Beck has been on a long, challenging journey toward nose reconstruction after a traumatic accident left him with a missing nose.

December 20, 2017 was a normal day of winter break for the Beck family. Tristan and his older sister were visiting their mother’s office to drop off food for a party. When they returned to the car, a dog was in the parking lot, showing no signs of aggression. However, when Tristan began to throw the dog a piece of food, it lunged at Tristan’s face and pulled him down. Tristan’s sister pulled him back, and the dog ran away.

All Tina Beck, Tristan’s mother, remembers is the blood on his face when his sister brought him back into her office.

“There was so much blood it was hard to see exactly what was wrong,” said Beck. “It was very hard for me to look at my son at first. My heart hurt and I was blaming myself for what had happened, but I wanted to be strong for him.”

The family called 911, and Tristan was transported to Seattle Children’s Emergency Department. Read full post »

Baby With Heart Defects Makes a Dramatic Recovery

Carolina Castañeda and Jesus Farias were driving home from a family outing with Olivia, their newborn daughter, when they heard her making a strange noise. As first-time parents, they thought it might be normal. However, when Olivia continued making the sound, the couple began to worry. They stopped the car, took Olivia out of the car seat, and noticed that her body had gone limp.

“Her hands and legs just stopped moving,” said Castañeda. “I didn’t know what was normal, but it did not look normal at all.”

Castañeda was startled to see Olivia’s blue lips and her eyes rolling back. The couple rushed their daughter to the nearest hospital in Yakima, trying to keep her awake. When they arrived, Olivia’s eyes were closed.

“Nurses ran around the desk and took her out of my arms – they didn’t even ask questions,” said Castañeda. “It all happened so fast.”

Doctors told the family that Olivia’s body had worked so hard to stay alive that her vessels were shutting down. When Olivia finally opened her eyes and looked around, Castañeda said she remembers feeling at peace, like everything was going to be okay.

The hospital flew Olivia to Seattle Children’s from the Yakima airport. The family was told that a helicopter would have been too slow for Olivia, in her condition.

The new parents were shocked to learn that their 2-week-old baby was in cardiogenic shock due to critical congenital heart defects and she would need surgery from Seattle Children’s Heart Center.

“Everything was scary,” said Castañeda. “She was my baby, she was my firstborn.”

Read full post »