Montana teen becomes first patient at Seattle Children’s to receive the HeartMate II ventricular assist device (VAD) and a heart transplant while being supported with an implantable VAD. He is also the first patient at any pediatric hospital in the Pacific Northwest to leave the hospital with a VAD while waiting for a heart transplant.
The HeartMate II Ventricular Assist Device
Adam Kingsbury went to see his family doctor for what he thought was a bad cold. It was there that Adam, a 16-year-old from Stevensville, Mont., was diagnosed with asthma and sent home with a prescription for an inhaler and orders to take it easy.
After a few weeks, Adam’s symptoms didn’t improve. He was having trouble breathing so his mom took him back to the doctor where it was discovered that Adam had an abnormal heart rhythm. At age 5, Adam was diagnosed with myotubular myopathy, a condition that makes the heart muscle weak. Because of this, his care team knew it was extremely important to find out what was causing the abnormal heart rhythm right away.
The clinic called Seattle Children’s Montana-based pediatric cardiologist Bruce Hardy, MD to examine Adam’s heart. An echocardiogram revealed that Adam was suffering from cardiomyopathy, a condition which causes the heart to lose its pumping strength. Adam’s heart was failing and he would likely need a heart transplant. Within three hours of seeing Dr. Hardy, Adam and his mom, Kate, were on a medical transport plane to Children’s main campus in Seattle where Adam’s condition could be best treated. Read full post »
This past weekend, baby Poppy Dahl from Belgrade, Mont., celebrated her 6-month birthday. This was a major milestone day for Poppy and her family – Poppy survived and is now home with her family after fighting for her life due to a life-threatening heart condition, hypoplastic left heart syndrome. She was diagnosed with the condition before she was born.
A program by Seattle’s KOMO 4 News which aired on Poppy’s half-year birthday, documents Poppy’s story of survival as her family and the teams at Seattle Children’s Hospital and UW Medicine do all they can to give Poppy a fighting chance.
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With two high-profile pediatric transplant cases making headlines recently, many people are paying closer attention to organ donation. Simon Horslen, MB ChB, medical director for liver and intestinal transplantation at Seattle Children’s Hospital, hopes the current debate will be a good boost for organ donation. The real issue, he says, is that there are not enough donors for everyone who needs an organ.
Horslen has cared for transplant patients for years, and he sympathizes with parents who are fighting for their kids to have a chance at life. But he notes that organ donation guidelines exist for a reason.
“It’s right that the families of these kids do everything they can to advocate for their children,” says Horslen. “But it’s a bad precedent if every time someone gets to the bottom of the list or is going to struggle to get transplanted, that they go to the courts to challenge it.” Read full post »
In a northern California suburb in 1999, Kaitlin Burns was born very sick, that much was certain. She was extremely lethargic, vomited non-stop and soon wouldn’t eat anything. When her family finally received a diagnosis two weeks after her birth, the news was devastating.
Kaitlin was diagnosed with propionic acidemia, a rare, inherited metabolic disorder that affects about one in 100,000 in the United States. Propionic acidemia prevents the body from processing protein properly, leading to an abnormal buildup of a group of acids known as organic acids. Abnormal levels of organic acids in the blood, urine and tissues can be toxic and can cause serious health problems.
Michelle Burns, Kaitlin’s mother, recalls how the local hospital at the time was their second home. “During the first year of her life, I can’t even count on my fingers and toes how many trips we made,” she explains.
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Evelyn Sherman had a kidney transplant this past Halloween, just 10 days before she turned three years old. Her dad, Keith, was her donor. In honor of Donate Life Month, Evelyn’s mom, Julianne, reflects on their journey as they near the six-month anniversary of the transplant.
Getting the diagnosis
Evelyn was nine months old when she started falling off the chart. I thought my milk supply had dropped off so we were just sort of waiting it out, but she was still falling off the curve. Then we tried to beef up her diet and that wasn’t working.
By the time we got the diagnosis when she was 15 months old, we had made a tour of Children’s. She had some other physical manifestations of something being wrong. She had a sixth toe. She had wine stains on her skin. So we’d been to orthopedics to have her toe removed. And we’d been to dermatology. We felt like we were ending our tour when we got to nephrology. It was our last stop.
Evelyn was diagnosed with renal dysplasia, meaning that the kidney developed incorrectly in the beginning. She also has kidney reflux and that means that the urine is going back up into the kidneys from the bladder. It often causes a kidney infection, but for whatever reason, she didn’t really manifest that.
When the doctor delivered the news that there was something wrong with her kidney, I remember thinking, “I feel like you’re saying something really important to me and it’s just not registering because you have got to be talking about somebody else.” I couldn’t comprehend what he was saying, that I had a critically ill child.
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