Christal Hays, of Anchorage, Alaska, is only 18 years old, but she is wise beyond her years. A former patient of Seattle Children’s Hospital, Hays has been through a lot in her life. Diagnosed with genetic nephrotic syndrome and heart disease at only 8 months old, she had a kidney transplant and underwent open heart surgery at Seattle Children’s and grew up traveling to and from Seattle for treatment. For Hays, her untraditional childhood was normal. And from this experience, she has a message for others, “You are more than your disease.”
It’s a message that is now inspiring others on a national level thanks to an essay she decided to share with the world. Read full post »
According to a new study that will be highlighted this weekend at the Pediatric Academic Societies (PAS) annual meeting, women, particularly younger women, are still smoking while pregnant, putting their newborns at risk for congenital heart defects.
Patrick Sullivan, MD, lead author of the study and clinical fellow in pediatric cardiology at Seattle Children’s Hospital, said maternal smoking seemed to place newborns at a 50-70 percent greater risk for specific heart anomalies. The risk was highest in the heaviest smokers. Read full post »
Julie Kobayashi, a 12-year-old girl from Hawaii, is Seattle Children’s third patient to receive the HeartMate II ventricular assist device (VAD), a device that allowed Julie to leave the hospital while waiting for a life-saving heart transplant. This is her story, from failing heart to transplant.
Julie Kobayashi started feeling sick on a Saturday in November 2013. She felt nauseous, but didn’t have a fever. The symptoms reflected that of the stomach flu. Her family wasn’t overly concerned at first. They thought the symptoms would subside and their daughter would be back to her normal self in no time. For Julie, an active and fun-loving 12-year-old, she usually didn’t let anything slow her down for too long.
When Monday rolled around, Julie felt well enough to go to school. She enjoyed school and had been working really hard practicing her clarinet for an upcoming concert. Missing school wasn’t an option in Julie’s mind. Read full post »
In honor of American Heart Month, we are sharing Gabrielle’s incredible journey from sick baby to healthy toddler.
Christen Simon was 18 weeks into her third pregnancy when a routine ultrasound revealed the unthinkable: a serious birth defect. The daughter that Christen and her husband would call Gabrielle would need a heart transplant soon after birth.
“At that point I was in shock,” said Simon. “I didn’t know heart defects existed before that point in time. It wasn’t even in my scope of possibilities, not for my daughter.” Read full post »
In honor of American Heart Month, we are sharing a series of stories about some of our incredible heart patients who have overcome the odds.
Nobi Johnson was a seemingly healthy, charismatic and extremely athletic 13-year-old girl. She excelled at sports and was a star on the basketball court and soccer field. There was nothing she couldn’t do if she put her mind to it, which made the diagnosis of an anomalous coronary artery difficult to understand. Sports were out of the question, due to the unforeseen heart defect. How would Nobi find her happiness again? It would take over a year, but Nobi would find herself back on the court, thanks to her determination to play again and Seattle Children’s and Mary Bridge Children’s Regional Cardiac Surgery Program. Read full post »
Scientists at Seattle Children’s Research Institute are using a unique species of fish to find out why some babies are born with heart malformations and how a defective heart might repair itself.
About one percent of U.S. babies are born with a heart defect, requiring medication, surgery or catheter procedures. While the condition is common, the cause is often unknown. Multiple genes are believed to contribute to heart malformations so genetic testing is difficult.
That’s where the minnow-sized zebrafish comes in. Zebrafish are ideal research subjects because they carry many of the same genes that are found in humans, including those that contribute to heart defects. Zebrafish also have transparent embryos that grow outside the mother, allowing scientists to easily observe their development. Read full post »
The heart that connects Rachel Cradduck to a family in Mexico was transplanted into her son Ethan Robbins at Seattle Children’s Hospital when he was just five months old. It came from a baby who died in a California hospital after her family traveled there for medical care.
“A heart transplant is a bittersweet thing,” says Rachel. “During Ethan’s transplant and every day since, I have been deeply aware that another family suffered a tragic loss. I wanted to thank them for the incredible thing they did.”
Rachel had her chance last fall – about a year and a half after Ethan’s transplant – through a unique video teleconference arranged by Seattle Children’s Heart Center and Telemedicine teams at Children’s, and on the other end by Sierra Donor Services (SDS), the Sacramento-based organ procurement organization that helped facilitate the transplant. Read full post »
Chrissy Ehlinger had a very normal pregnancy, so when her son Carter was born she had no concerns about his health. He was beautiful and perfect and looked like any healthy baby should. It wasn’t until a simple, inexpensive and non-invasive newborn screening test called pulse oximetry screening revealed the unthinkable.
Pulse oximetry testing is not required in every state, even though it is recommended by the United States Department of Health and Human Services, the American Heart Association, the American College of Cardiology, and the American Academy of Pediatrics.
Fortunately for Chrissy, the hospital where baby Carter was born elected to do pulse oximetry testing on newborns. Here, Chrissy recounts how that decision saved her little boy’s life. Read full post »
AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore.
“The luckiest or unluckiest boy”
Before he became ill, AJ’s mom Yoo-Lee Yea said he was an especially social first-grader and a frequent jokester. But on the morning of Nov. 12 he was quieter than usual. Later that day AJ threw up at school and by the evening he had a high fever. AJ’s primary care doctor said he likely had a virus and should feel better in a few days. Read full post »
The holiday season is a time where family and friends come together and often reflect on what they are most thankful for. It’s a time of celebration and joy, and for some, it’s also a time to give back.
For 17-year-old Sophie Kuniholm, this time of the year is a combination of all those things. She’s thankful for her health, the support of her family and the ability to give back to others. But most importantly, she’s thankful for her heart, both literally and metaphorically. Read full post »