Parker Rana, 15, has truly overcome the odds to get to where he is today. Born with multiple heart defects, Parker grew up in and out of the hospital. But now, he’s a thriving teenager with an incredible story of hope.
Below is Parker’s story: from hospital bed to trackside, cheering on his favorite racing team, The Heart of Racing.
An unexpected delivery
Jaydine Rana, Parker’s mother, was expecting a healthy baby boy when she delivered Parker on June 2, 1999 in Mt. Vernon, Wash. Unfortunately, she got some unexpected news that day. Parker was born with a combination of four heart defects – a hole in his heart, a missing pulmonary artery and valve, an enlarged ventricle and an overriding aorta. He was airlifted to Seattle Children’s Hospital shortly after birth for treatment. Read full post »
April marks National Donate Life Month, a time devoted to spreading awareness about the tremendous need for increasing the number of organ, eye and tissue donors. According to the United Network for Organ Sharing (UNOS), more than 120,000 people in the U.S. are on the waiting list for a lifesaving organ, and sadly, more than 21 people die each day waiting for a transplant. For some, becoming a donor and the transplantation process can seem daunting, but the impact on a recipient’s life is invaluable.
Seattle Children’s has one of the best and busiest pediatric transplant centers in the nation, working across a six-state region to provide lifesaving organ transplants for patients. Seattle Children’s Transplant Center is one of the few in the world that performs living donor liver transplants, is one of the top five kidney transplant centers in the U.S. and also has some of the best survival outcomes in the nation for pediatric liver, kidney and heart transplants. Read full post »
Abnormal genes found in Kawasaki disease patients could pave the way for early detection and treatment of not only Kawasaki disease but also many other inflammatory diseases such as psoriasis and multiple sclerosis (MS), according to a study recently published in the International Journal of Immunogenetics.
The study, titled “Imputation of class I and II HLA loci using high-density SNPs from ImmunoChip and their associations with Kawasaki disease in family-based study,” looked at blood and saliva DNA samples provided by 112 Kawasaki disease patients and their biological parents. The goal of the study was to identify possible genetic mutations, said author Dr. Michael Portman, a Seattle Children’s Hospital cardiologist and member of the Center for Developmental Therapeutics at Seattle Children’s Research Institute. Read full post »
The language of medicine is full of complicated words and acronyms. For parents of children with serious heart conditions like congenital heart disease or pulmonary hypertension, one such acronymn that may incite fear or worry is hearing that their child may need a device called a VAD (Ventricular Assist Device). However, these devices, combined with Seattle Children’s Heart Center’s medical expertise, save the lives of many children and teens each year.
What is a VAD?
A ventricular assist device (VAD) is a mechanical pump a surgeon implants inside or outside a child’s chest and connects to the heart during open-heart surgery. A VAD can be used for patients waiting for a heart transplant or for patients whose heart muscle needs to rest. Seattle Children’s has a variety of VAD options for patients large and small, from tiny babies to young adults, which aren’t available at every hospital. VAD options at Seattle Children’s include the Berlin Heart, CentriMag and PediMag centrifugal pumps, HeartMate II, Heartware HVAD and SynCardia Total Artificial Heart (TAH).
The newer, fully implantable VADs like the HeartMate II, Heartware HVAD or TAH can also greatly enhance the quality of life for many patients who are awaiting a heart transplant, often allowing them to leave the hospital. For one such patient from Hawaii named Julie Kobayashi, her implantable VAD even allowed her to leave the hospital while she waited for a heart and achieve her dream of playing in the snow for the first time.
To learn about each type of VAD, watch the video above as cardiac surgeons Dr. Jonathan Chen and Dr. Michael McMullan explain the many types that Seattle Children’s offers, and why it’s important to choose the device that best matches a child’s needs.
Whether it’s a parent’s first or fourth child, pregnancy can be filled with equal parts excitement and anxiety. Expectant parents can opt for their doctors to perform a variety of prenatal tests to screen for genetic abnormalities or birth defects while the baby is still developing. If these screening tests come back positive, parents are referred to genetics counselors like me to learn more about their diagnostic testing options. A diagnostic test can be done to confirm if your baby does or does not have the condition. Depending on individual circumstances, some families pursue diagnostic testing during a pregnancy while others elect to pursue testing after the baby is born.
Once a diagnosis is made, families can meet with specialists to learn more about both short and long term care for their baby.
Seattle Children’s Prenatal Diagnosis and Treatment team sees families every day who recently received unexpected prenatal test results. These families come to us with questions and may feel anxious about next steps. We’re here to help give parents the information they need to prepare for the future. Read full post »
Dr. Stephen Seslar prepares for a complicated surgery using a new, realistic heart model created with 3-D printing.
Kami Sutton, 26, who you met last week, has been waiting for a heart transplant for five years. But surgeons at Seattle Children’s and University of Washington Medical Center (UWMC) are now preparing to perform a difficult surgery that could greatly improve her quality of life and may even eliminate her need for a transplant. It’s possible for the first time ever, thanks to a new, realistic heart model created with 3-D printing. Read full post »
In honor of Congenital Heart Defect (CHD) Awareness Week, 26-year-old Kami Sutton wanted to share her journey that began at Seattle Children’s the day she was born.
26-year-old Kami Sutton
Seattle Children’s is my home. From the previously trademark blue bubble letters, the giraffes (which were recently replaced in the remodel), trains and Mickey Mouse – it is home. It is full of the people who I have trusted with my life since before I can even remember.
I was transferred to Seattle Children’s from a local hospital on Sept. 21, 1988, at only four hours old after being delivered via emergency C-section. I was blue and unable to breathe on my own. My parents were told I most likely would not survive the 30 minute trip down I-5 to the hospital. Read full post »
Julie Kobayashi, 12, traveled from Hawaii to Seattle Children’s for her heart transplant.
Children who need a heart transplant face a frightening waiting game before a donor heart becomes available. They must live with a failing heart for months, or even years, as clinicians strive to keep them healthy enough for transplant. Nationally, these patients face the highest waiting list mortality in solid-organ transplantation medicine, with 17% of children dying while waiting for a heart transplant.
Thankfully, Seattle Children’s has one of the best waitlist mortality rates among pediatric heart transplant centers, as reported to the United Network of Organ Sharing. The hospital also treats some of the region’s most complex, advanced heart disease and heart transplant cases and has one of the highest 3-year patient survival rates in the country.
“We are proud to be ranked among the best pediatric heart transplant centers in the country,” said Dr. Yuk Law, medical director of the Cardiac Transplant/Heart Failure Service at Seattle Children’s. “We have created a team of skilled experts who have dedicated their careers to treating heart failure and transplant cases.” Read full post »
Jennifer Bevaart’s son William was diagnosed with Kawasaki disease in September, 2014.
In honor of National Kawasaki Disease Awareness Day, we are sharing the story of William, a 10-year-old boy who lives with the disease, and why Seattle Children’s, an international leader in Kawasaki disease research, is the best place for children like William to receive treatment.
In September, Jennifer Bevaart’s son William developed a fever that lasted for days. He was lethargic, had a rash on his chest and his eyes were bloodshot. Over the next two weeks, Bevaart took William to at least four different specialists, each of whom suggested a different diagnosis: a sinus infection, walking pneumonia, bronchitis, even scarlet fever. Each treatment failed to ease William’s symptoms. He went from an active, tae kwon do enthusiast to a weak boy who was too weak to walk even the short distance to the mailbox without lying down to rest.
“Call it mother’s intuition, but I just knew something was very wrong with my son,” Bevaart said. “I felt like I was watching him die.” Read full post »
As we head into the New Year, we’d like to reflect on some of the incredible clinical advancements of 2014 that show how our doctors have gone the extra mile for our patients.
In the Children’s HealthLink Special video above, watch how futuristic medicine has saved the lives of the littlest patients at Seattle Children’s. From 3D-printed heart models to liquid ventilation, doctors and families reveal the amazing benefits of innovative treatments that challenge the status quo. Read full post »
Parker Rana, 15, has truly overcome the odds to get to where he is today. Born with multiple heart defects, Parker grew up in and out of the hospital. But now, he’s a thriving teenager with an incredible story of hope.
Whether it’s a parent’s first or fourth child, pregnancy can be filled with equal parts excitement and anxiety. Expectant parents can opt for their doctors to perform a variety of prenatal tests to screen for genetic abnormalities or birth defects while the baby is still developing. If these screening tests come back positive, parents are referred to genetics counselors like me to learn more about their diagnostic testing options. A diagnostic test can be done to confirm if your baby does or does not have the condition. Depending on individual circumstances, some families pursue diagnostic testing during a pregnancy while others elect to pursue testing after the baby is born.
