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Although children don’t typically fall seriously ill from the new coronavirus, doctors in Europe are now expressing concern that children with COVID-19 have developed mysterious symptoms that mimic those appearing with Kawasaki disease.
On the Pulse asked Dr. Michael Portman, pediatric cardiologist and director of the Kawasaki Disease Clinic at Seattle Children’s, to help break this emerging issue down for parents and caregivers. Read full post »
Worry flooded Candice Andrews’ mind as doctors wheeled her newborn son away for open heart surgery.
“I knew about his heart condition since I was 7 months pregnant,” Andrews said. “However, it was still very scary knowing that someone was going to do surgery on my 7-day old baby.”
Andrews’ son, Marcus, was born with hypoplastic left heart syndrome, a rare and serious birth defect that occurs when the left side of the heart is not fully developed.
Fortunately, Marcus recovered well after his first of what would be three surgeries needed to treat his heart condition.
“Doctors mentioned how exceptional his recoveries were,” Andrews said. “We were so grateful, given how unknown the entire situation was for us.”
Although his first few years of a life were a bit rocky, Marcus remained relatively healthy as he progressed through childhood.
On July 10, 2018, Avery Crawford entered the world – a beautiful and seemingly perfect baby girl. Little did anyone know about the battle that was secretly raging in her tiny body as her heart struggled to do its job.
Avery was a miracle to her parents, Elaine and Jordan Crawford. Their 7-year-old son, Quincy, had always wanted a little brother or sister, but doctors said it wasn’t possible. Years went by and they began to lose hope. Then one day, out of the blue, their dream came true. Elaine was pregnant.
“She was a gift,” said Elaine. Read full post »
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 »
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 »
A year ago, baby Titus Sickles was fighting for his life. In need of a new heart, doctors didn’t know if he was going to make it to transplant. Patiently and desperately, the family waited on the transplant list, watching as their newborn baby’s heart failed before their eyes.
“I knew he wasn’t doing good,” said Rena Sickles, Titus’ mother. “I totally lost it emotionally and said, ‘He’s sick of fighting and I can’t make him do it anymore. So, when he’s ready to go, we’ve just got to let him.’ That’s a really hard thing to to be okay with.”
Today, Sickles said you would never know by looking at Titus what he’s been through. He’s is a happy, healthy 1-year-old thanks to a gift Rena says she can never repay – a new heart.
“There are no words to express how grateful we are,” said Sickles. “It’s a miracle he’s here today. We make the most of every moment we have with him because we know they’re not promised.” Read full post »
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 »
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.”
At Seattle Children’s Research Institute, scientists are genetically-engineering zebrafish to harbor human DNA mutations known to contribute congenital conditions in children.
More than five years ago, when Dr. Lisa Maves, a scientist at Seattle Children’s Research Institute, first started using CRISPR to make genetic alterations in zebrafish, she saw the potential for the minnow-sized fish to help doctors understand how genetic mutations contribute to a child’s condition.
“Essentially, we set out to make a patient’s fish,” Maves said. “The zebrafish has a genome that is remarkably similar to humans. As new gene editing technology was just becoming available, I wondered whether we could use this technology to create a fish that mimicked the complex genetic conditions we see in children.”
Maves hypothesized that genetically engineering the fish in this manner would help uncover how different genes affect development and cause disease. Read full post »
Katja, now 3, was the youngest patient at Seattle Children’s to undergo the Ozaki procedure.
Although Katarina Anja, or “Katja,” De Groot was born with a rare heart defect called truncus arteriosus, the active toddler never let her condition stop her from running, playing and going to the park.
However, when she was 2 years old, Katja began sleeping for most of the day and withdrawing from the activities she usually enjoyed. That was when her mother knew something was wrong.
“She wasn’t herself anymore,” said Jennifer De Groot. “My daughter is usually a happy-go-lucky child who loves to live life to the fullest. I didn’t know how much longer we could see her like that. It’s like we had reached the point of no return.”
De Groot’s concerns grew, and she knew she needed to seek help for her daughter. Dr. Maggie Likes, Katja’s cardiologist at Seattle Children’s, noticed a difference in her echocardiogram. It showed her aortic valve was not functioning properly.
“We had hit a tipping point,” Likes said. “Between the concerning changes on her echocardiogram and what her mom was seeing at home, it was time to do something about her aortic valve.”
De Groot knew her daughter wouldn’t be able to lead an active lifestyle with a mechanical valve because it would mean that Katja would have to undergo a lifelong regimen of anti-coagulants, commonly known as blood thinners. She made a bold move and asked the Seattle Children’s Heart Center team if they could perform an innovative surgical technique that would repair her daughter’s aortic valve – an unexpected suggestion that led to a collaborative decision.
At 2 years old, Katja would become the youngest child at Seattle Children’s to undergo the Ozaki procedure.
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