In honor of Organ Donor Awareness Month, we’re sharing the story of Anna and Andrew Copley. Read below about Anna’s journey to transplant and the bond that will tie two siblings together forever.
Anna Copley, 15, and her family have known since Anna was a baby that she might need a kidney transplant. At only 3 weeks old, she contracted severe respiratory syncytial virus (RSV), a virus that infected her lungs and breathing passages. Her kidneys failed due to the virus and even though she recovered, her kidneys were damaged beyond repair. As Anna grew up, her kidneys got progressively worse, unknowingly to the Copley family.
“We are thankful that Anna’s kidney’s ‘failed slowly,’” said Rebecca Copley, Anna’s mother. “Her kidney failure progressed so slowly, that her body adjusted, and for her, she only knew this as normal.” 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.
Jack sits with his uncle (right) who donated his kidney to him.
It can be hard enough to remember to take a multivitamin every day; imagine having to take 20 pills at specific times throughout the day, every day, for your whole life. That’s the reality individuals who have undergone an organ transplant must face. In order to stay healthy and to keep their bodies from rejecting their transplanted organ, a myriad of medications must be taken daily, including immunosuppressants. It can be a difficult pill to swallow, especially for teenagers.
According to research studies, adolescents have the worst outcomes after transplant out of any age group. Adolescents also have the highest rate of non-adherence, which means they either decide not to take their medication or just plain forget, which can lead to the rejection of the organ.
“You can imagine taking that many medications every day could get a little old. It’s a major burden to put on a teenager,” said Dr. Jodi Smith, medical director of kidney transplant at Seattle Children’s Hospital, and a researcher with the Center for Clinical and Translational Research (CCTR). “They were not meant to have this much stuff going on in their life. But if you don’t take your meds, you’ll eventfully need another kidney transplant, and once you lose one it’s harder to get another.” 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 »
Chief of cardiology Dr. Mark Lewin leads the Prenatal Diagnosis and Treatment team at Seattle Children’s. He specializes in fetal diagnosis and the ongoing care of children with congenital heart defects.
When pregnant couples discover problems with their babies, Seattle Children’s Prenatal Diagnosis and Treatment Program helps them make some of the toughest decisions they’ll ever face.
When an ultrasound revealed a problem with her baby’s heart, Melinda Deitz – then five months pregnant – was referred to Seattle Children’s for a fetal echocardiogram – a test to pinpoint what was wrong.
Deitz could feel the baby moving in her belly as she and her husband, Rich, waited for the results. They hoped everything was OK or that the problem was easy to fix. But when they saw the look on Dr. Mark Lewin’s face they knew it was serious. 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 »
In honor of the New Year, we’re taking a look back at some of our most popular and memorable blog posts from 2014. Below is a list of our top 10 posts. Here’s to another great year of health news to come. Happy New Year!
Two doctors at Seattle Children’s went the extra mile to save Tatiana, one of the sickest babies they’ve ever seen. They got FDA approval to use a long-forgotten drug and are now inspired to help make this drug available to save more lives.
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. Read full post »
The following is part 2 of our two-part series on ECPR, a combination of CPR and ECMO offered at Seattle Children’s Hospital to save the most fragile patients’ lives. Part 1 covered Hannah Mae Campbell’s incredible story where ECPR and a heart transplant saved her lifeand allowed her to be the thriving toddler she is today.Here, we discuss how Seattle Children’s has spearheaded a first-of-its-kind ECPR simulation program to improve the process that allows the hospital to save patients in a time of crisis.
In an ECPR simulation in Seattle Children’s neonatal intensive care unit, the surgeon works to get the mannequin on the ECMO pump.
ECPR takes place when a patient goes into cardiac arrest, does not respond to CPR and is then put on Extracorporeal Membrane Oxygenation (ECMO), a machine that functions for the heart and lungs when the organs fail or need to rest. Hannah Mae Campbell’s experience demonstrates the importance of technology like ECMO and why it’s important to continually improve complex, life-saving processes like ECPR.
Since January of this year, Seattle Children’s has executed the largest-scale ECPR simulations in the nation, with medical staff coming together bimonthly to practice as though they were in a real ECPR situation. Even though Seattle Children’s ECPR outcomes are higher than the national average, the hospital initiated the simulations with the goal of standardizing each step of the process to further improve outcomes for patients. Read full post »
The following is part 1 of a two-part series on ECPR, a combination of CPR and ECMO offered at Seattle Children’s Hospital to save the most fragile patients’ lives. Here, we tell Hannah Mae Campbell’s story and how ECPR saved her life. In part 2, we’ll discuss how Seattle Children’s has spearheaded a first-of-its-kind ECPR simulation program this year to improve the process that allows the hospital to save patients in a time of crisis.
Today, Sept. 24, marks a remarkable milestone for the Campbell family – the end of a long, tumultuous journey that began the day their daughter, Hannah Mae Campbell, was born. It’s the anniversary of the day Hannah received a new heart, and a chance at life two years ago.
Hannah’s journey begins
When Jennifer Campbell of Everett, Wash., was pregnant with Hannah she prepared as much as she could and followed all the prenatal guidelines to a tee. This was her first baby and she, as all parents do, wanted her little girl to be perfect.
Once Hannah was born on May 18, 2012, Jennifer and her husband Jon remember how the joy of seeing their little girl for the first time quickly turned into terror. Hannah was lethargic, her hands and feet were blue and her heart was rapidly pumping at 253 beats per minute. The room at the local birthing center quickly filled with doctors and then Hannah was taken to the neonatal intensive care unit (NICU). Twelve hours later, Hannah was transferred by ambulance to Seattle Children’s Hospital.
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.