Jude Xenakis, 10 months, with parents Eden and Michael Xenakis and sister Clementine. Jude came to Seattle Children’s for ECMO when he was born with severe meconium aspiration.
This summer, Seattle Children’s hosted a reunion for patients who have one unique experience in common: Extracorporeal Membrane Oxygenation (ECMO) played in key role in saving their lives. Patients, families, doctors and nurses gathered to celebrate the 25th anniversary of Seattle Children’s use of ECMO, an advanced life-support therapy that can replace heart and lung function when these organs fail or need to rest. ECMO is used for a range of life-threatening medical conditions and complications, and Seattle Children’s has been named a Center of Excellence by the Extracorporeal Life Support Organization because of its expertise with technologies such as ECMO.
“Seeing all the kids that ECMO helped save means the world to our doctors and nurses,” said Dr. Michael McMullan, Seattle Children’s Director of Mechanical Cardiac Support and Extracorporeal Life Support (ECLS).
Over the past 25 years, Seattle Children’s ECLS program has touched the lives of more than 700 families. Here we share the stories of a few of these patients – from a cheeky baby to a recent law school graduate – who came together to share their experiences and celebrate where they are today. Read full post »
Aaden Adams with his parents, Cheree and Andrew Adams
Aaden Adams remembers waking up in his room in the Cardiac Intensive Care Unit (CICU) at Seattle Children’s Hospital and asking for red Popsicles.
“Everybody wanted me to talk and I wanted a red Popsicle,” said the precocious 6-year-old with a face full of freckles. “So I asked for Popsicles. Do you remember that, Mom?”
“Yes, we remember that well,” answered Aaden’s mom, Cheree Adams. “That was a good day. That was the day we knew that you were on the right path. We knew that you were coming back to us.”
Just two weeks prior, Aaden, who was born with a congenital heart defect, was so near death that his parents were preparing themselves for the reality that he might not make it out of the hospital. It was a situation they had not even considered.
“He came here for a pretty minor procedure,” said Andrew Adams, Aaden’s father. “He was supposed to be in and out of the operating room, but then his body just shut down. His heart wouldn’t restart.”
Dr. Erin Albers, Aaden’s attending cardiologist, said the complication was so unusual that no one on the care team had seen it before. Read full post »
Lee’or, Sadie and Wendy Rutenberg
Lee’or and Wendy Rutenberg knew that their baby daughter, Sadie, was going to be born with heart problems. Ultrasounds showed that the walls between her heart’s atria and ventricles were not forming correctly. But they didn’t think it would be a problem for Sadie right away.
“Most children with conditions like Sadie’s don’t need surgery until they are 2 or 3 years old. We thought we’d have two or three years of relatively normal life before we’d have to do all of this,” Lee’or Rutenberg said as he gestured toward his daughter’s bed at Seattle Children’s Hospital.
Unfortunately for the Rutenbergs, Sadie’s heart problems were more complex than expected. The only option for her was a type of pediatric heart valve that is currently in clinical trial. Sadie would become the first child in the U.S. to receive the valve as part of the HALO U.S. IDE Trial, which is testing the safety and efficiency of the St. Jude Medical Masters HPTM Series 15mm mechanical heart valve. Read full post »
Jacob Smith, 16, from Mukilteo, Wash.
Most 16-year-olds wish for a car for their birthday, but not Jacob Smith from Mukilteo, Wash. Jacob‘s wish was for a heart. Fortunately, he didn’t have to wait long for his wish to come true. He received a call from his doctors on Saturday, June 6, 2015. They had a match! He would receive a heart before he turned 16.
“I couldn’t have ever imagined that this would be our story, but here we are,” said Angela Smith, Jacob’s mom. “It was on a Thursday when Jacob got sick, a Thursday when he had open heart surgery, a Thursday when he was put on the transplant list, and now on Thursday, June 18, he’ll celebrate his birthday with a new heart.” Read full post »
The Heart of Racing team is focused on two things – winning races and raising money for kids at Seattle Children’s. They race, and win, for children who need complex cardiac care. And their checkered flag won’t wave until they’ve helped to fix every little heart that needs mending. To date, they’ve raised more than $5 million for Seattle Children’s Heart Center, and helped to fund a new state-of-the art cardiac catheterization laboratory at Seattle Children’s which opened earlier this year.
“When you put the right people together, there’s nothing you can’t do,” said Don Kitch, who founded the Team Seattle Guild at Seattle Children’s and The Heart of Racing Team. “There’s nothing like Seattle Children’s Cath Lab in the world, and we made it happen with a race car! It’s absolutely incredible to think about. We’re giving kids the chance for a happy, healthy life.” 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.
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 »
Dr. Michael Portman
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.
Read full post »
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 »