Heart Center

In honor of American Heart Month, we are sharing a series of stories about some of our incredible heart patients who have overcome the odds.

Nobi Johnson was a seemingly healthy, charismatic and extremely athletic 13-year-old girl. She excelled at sports and was a star on the basketball court and soccer field. There was nothing she couldn’t do if she put her mind to it, which made the diagnosis of an anomalous coronary artery difficult to understand. Sports were out of the question, due to the unforeseen heart defect. How would Nobi find her happiness again? It would take over a year, but Nobi would find herself back on the court, thanks to her determination to play again and Seattle Children’s and Mary Bridge Children’s Regional Cardiac Surgery Program. Read full post »

Scientists at Seattle Children’s Research Institute are using a unique species of fish to find out why some babies are born with heart malformations and how a defective heart might repair itself.

About one percent of U.S. babies are born with a heart defect, requiring medication, surgery or catheter procedures. While the condition is common, the cause is often unknown. Multiple genes are believed to contribute to heart malformations so genetic testing is difficult.

That’s where the minnow-sized zebrafish comes in. Zebrafish are ideal research subjects because they carry many of the same genes that are found in humans, including those that contribute to heart defects. Zebrafish also have transparent embryos that grow outside the mother, allowing scientists to easily observe their development. 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 »

Chrissy Ehlinger had a very normal pregnancy, so when her son Carter was born she had no concerns about his health. He was beautiful and perfect and looked like any healthy baby should. It wasn’t until a simple, inexpensive and non-invasive newborn screening test called pulse oximetry screening revealed the unthinkable.

Pulse oximetry testing is not required in every state, even though it is recommended by the United States Department of Health and Human Services, the American Heart Association, the American College of Cardiology, and the American Academy of Pediatrics.

Fortunately for Chrissy, the hospital where baby Carter was born elected to do pulse oximetry testing on newborns. Here, Chrissy recounts how that decision saved her little boy’s life. Read full post »

Courtesy Jordan.Nicholson.Photography.

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.

“The luckiest or unluckiest boy”

Before he became ill, AJ’s mom Yoo-Lee Yea said he was an especially social first-grader and a frequent jokester. But on the morning of Nov. 12 he was quieter than usual. Later that day AJ threw up at school and by the evening he had a high fever. AJ’s primary care doctor said he likely had a virus and should feel better in a few days. Read full post »

The holiday season is a time where family and friends come together and often reflect on what they are most thankful for. It’s a time of celebration and joy, and for some, it’s also a time to give back.

For 17-year-old Sophie Kuniholm, this time of the year is a combination of all those things. She’s thankful for her health, the support of her family and the ability to give back to others. But most importantly, she’s thankful for her heart, both literally and metaphorically. Read full post »

Transitions are a part of life. Becoming more independent, turning 18 years old, planning for college – these are transitions every teenager must face. It’s the gray area between adolescence and adulthood, a time when most teenagers step out from the shadows of their parents and head into the world in search of self-sufficiency. For some, however, this can be daunting, especially when it comes to taking ownership of one’s own health.

For a group of 11 teenagers at Seattle Children’s Hospital who have all at one time or another had a heart transplant, their transition means taking a more hands on approach to their personal health.

They are now old enough to be the drivers of their own healthcare decisions and they are old enough to transition out of Children’s to continue care at adult institutions. 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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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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