Transplant

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 »

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 »

In 2014, the Seattle Children’s Research Institute will implement life-saving projects, begin new studies to keep children safe and continue searching for ways to prevent and cure diseases that threaten some of our youngest patients. We are celebrating the New Year by highlighting some of the work that has researchers excited about 2014.

Looking forward to saving lives

Evelyn Tomlin was born April 16, 2013. Doctors in Oregon did not know that she had SCID until she was 3 months old.

On Jan. 1, years of work by Children’s research and clinical staff came to fruition when a test for severe combined immunodeficiency (SCID) was added to Washington’s newborn screening panel for all babies born in our state. Known as the “bubble boy” disease, SCID is a group of inherited disorders that cause severe abnormalities of the immune system. Babies with this disease often show no symptoms at birth, but after a few months they are unable to fight infections. Common illnesses, such as the flu or an ear infection, can be life-threatening for a child with SCID.

“Babies with SCID benefit from their mom’s immune system at birth, but once that goes away they have very little ability to defend themselves,” said Troy Torgerson, MD, director of Children’s Immunology Diagnostic Lab.

If caught early, more than 90 percent of SCID cases can be cured with a bone marrow transplant or gene therapy. But once a baby contracts an infection, survival rates drop to 50 to 60 percent.

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The faster medical research moves the more quickly cures can be found for countless children’s diseases. But one of the greatest delays researchers face when trying to solve medical problems is finding enough patients to study.

“Enrolling patients in a clinical trial to study a rare condition could take years,” said Mark Del Beccaro, MD, a researcher and vice president of medical affairs at Seattle Children’s.

But now a federally funded non-profit has awarded Children’s and seven other pediatric hospitals funding to create a national network of patient data with the goal of speeding up medical research and improving patient care. Read full post »

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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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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Heart transplant recipients (clockwise, from top left): Brooke Naab, Hannah Campbell, Batul Al-Salami and AJ Baird.

In one five-day span this September, four patients – one teenager and three critically ill infants – received life-saving heart transplants at Seattle Children’s.

For four families, the week meant the end of an agonizing wait and the start of a new life.

To perform four transplants in five days is very unusual, says Dr. Lester Permut, heart surgeon and interim chief of Cardiothoracic Surgery at Seattle Children’s. “But these are situations we train for.”

The first notification came at the end of a busy Friday: A donor heart was available for 6-month-old AJ Baird, who had spent half his short life waiting for a heart in Children’s Cardiac Intensive Care Unit (CICU).

A team from Children’s – two heart surgeons and a transplant nurse – set out immediately to get the donor heart while a team led by Dr. Permut and another heart surgeon, Dr. Michael McMullan, readied AJ at Children’s. The transplant surgery started early on Saturday, Sept. 22.

The team was finishing AJ’s surgery when the beeper went off again: a heart was available for 14-year-old Batul Al-Salami, who has been followed by the Heart Center since birth.

Then it happened again, and again, until Wednesday, Sept. 26. By then, the team had completed a total of four heart transplants – more than Children’s had ever done in a single week.

The cluster of transplants made for an exhilarating week.

“When a heart comes up for one of our patients, we’re excited about it and the energy from that sustains us,” says Dr. Permut, who traded the role of lead and assistant surgeon with Dr. McMullan for all four surgeries.

“It was a tour de force for a big group of people,” adds Dr. McMullan. “It took an incredible team and a very good system to pull this off.”

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