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Hudson Celebrates ‘Miraculous Recovery’ After Receiving Heart Transplant at Seattle Children’s

February 1, 2023  |  General, Heart Center, Patient Stories Comments Off on Hudson Celebrates ‘Miraculous Recovery’ After Receiving Heart Transplant at Seattle Children’s

Hudson was diagnosed with a rare form of muscular dystrophy at 8 years old and received life-changing care to Seattle Children’s

Like many 10-year-olds, Hudson Lewis loves to play video games, listen to music, swim and hang out with friends and family.

But unlike most kids his age, Hudson’s childhood has been filled with challenges no child should have to experience.

Hudson was born with a rare form of muscular dystrophy known to affect heart function but didn’t experience any cardiac affects until he was 9 years old.

Hudson’s mom, KaLinda Lewis, said the symptoms started suddenly — first affecting Hudson’s ability to walk and later causing severe stomach pain, dizzy spells, vomiting and even hallucinations.

“We noticed his body was getting weaker,” she recalled. “He would take a couple steps and his legs would give out on him.”

KaLinda took Hudson to Seattle Children’s Emergency Department where doctors determined that Hudson was in heart failure.

“When they said those two words, heart failure, it just blew us away,” KaLinda said.

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How You Can Support Patient Families Living Paycheck to Paycheck

November 29, 2022  |  General, Heart Center, Patient Stories, Philanthropy, Transplant Comments Off on How You Can Support Patient Families Living Paycheck to Paycheck

This is the second holiday season Seattle Children’s Building Maintenance Technician Jerome Ramos will spend with his family in the hospital.

 

His daughter has been in the hospital waiting for a heart transplant since July 2021.  Before coming to Seattle Children’s, 10-month-old Kaelyn, of Honolulu, Hawaii, was experiencing shortness of breath. 

 

When her face puffed up one day, her parents, Jerome and Christine Ramos, thought Kaelyn was having an allergic reaction and brought her to their local emergency department. Providers ruled out allergies, but recommended Kaelyn have an echocardiogram (ECHO) — a common test used to measure heart function.  

 

Shortly after leaving Kaelyn with the technician, Christine and Jerome heard a voice over the hospital paging system: “Code Blue, ECHO.”  “We were in shock,” Christine remembers. “She seemed fine when we dropped her off but when we got back to Kaelyn, we saw our child being resuscitated. It was devastating.”  

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‘The Ultimate Gift’ | Young Girl Flourishing After Receiving Life-Saving Transplant

October 25, 2022  |  Patient Stories, Transplant Comments Off on ‘The Ultimate Gift’ | Young Girl Flourishing After Receiving Life-Saving Transplant

4-year-old Ruby was born with biliary atresia and had a transplant in 2022 at Seattle Children’s

After receiving a life-saving liver transplant at Seattle Children’s, 4-year-old Ruby Josephine Mwamba is thriving and living a dramatically different life than she was at this time last year.

Ruby was born with biliary atresia, a liver condition that occurs when a baby’s bile ducts do not form normally and are unable drain bile. Bile is the liquid that helps the body break down fats, from the liver. When it doesn’t drain, it can cause scarring of the liver and yellowing of the skin and eyes called jaundice.

Ruby’s parents Melissa and Gabriel Mwamba learned about Ruby’s disease shortly after she was born. At only a few months old, Ruby had surgery to try to correct her condition, but unfortunately the relief was short-lived.

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Study Helps Teens Cope with Stress of Cancer, Diabetes

July 22, 2014  |  General Comments Off on Study Helps Teens Cope with Stress of Cancer, Diabetes

The teen years can be difficult– you’re fighting for your independence but still trying to develop an identity. And your 20s come with their own obstacles, like going to college, starting a career and living on your own. Can you imagine facing those developmental milestones while injecting yourself with insulin or enduring chemotherapy?

Dr. Abby Rosenberg, medical leader for Seattle Children’s Hospital’s Adolescent and Young Adult Cancer program and researcher in Seattle Children’s Research Institute’s Center for Clinical and Translational Research, and Dr. Joyce Yi-Frazier, research health psychologist at Seattle Children’s Research Institute, have seen teens with cancer and type 1 diabetes struggle physically and psychosocially. Adolescents and young adults with cancer are less likely to achieve social milestones like college, marriage, and employment and more likely to suffer from anxiety and post-traumatic stress. Likewise, teens with type 1 diabetes struggle to control their blood sugar levels and are more likely to be depressed.

“The teen and young adult years are a critical time of transition for anyone,” Rosenberg said. “When you add a serious illness to the mix, you are asking patients to do extraordinarily hard things. We want to help them integrate the experience into their identity so they are not only surviving, but thriving.”

An intervention model

To help patients, Rosenberg and Yi-Frazier worked together on the Promoting Resilience in Stress Management (PRISM) study. PRISM is an intervention model designed to teach patients resilience – the ability to maintain psychological and physical well-being in the face of stress – to buffer the impact of serious illness.

The study included 24 patients, ages 12 to 25, who had been diagnosed with cancer or type 1 diabetes. Participants worked with trained counselors to learn four primary skills to improve their personal resilience and cope with the challenges of their illness: stress-management; goal-setting; cognitive restructuring (turning a negative into a positive) and benefit finding (extracting meaning from adversity).

“These skills are developed throughout life, but they are less likely to be strong at such a young age,” Rosenberg said. “We want these patients to grow up to be the adults they were supposed to be and to move on in their live with a new sense of meaning and purpose.”

Qualitative feedback from the participants was universally positive.

“Patients found PRISM helpful and said it should become a standard part of care soon after diagnosis,” Yi-Frazier said. “Many said they wished they’d been taught these skills earlier in their treatment.”

Helping patients thrive

While it is difficult to prove that coping skills have a direct impact on cancer survival rates, Yi-Frazier published a study in 2013 demonstrating that resilience is likely to reduce stress and improve glycemic control in adolescents with type 1 diabetes.

“We hope patients will continue to use the skills taught in PRISM so they might live healthier lives,” Yi-Frazier said.

Patients who cope with stress better may also be less likely to participate in risky behaviors like drinking or smoking.

“Anecdotally, we’ve seen that patients who can handle the stress of a serious illness are more careful with the life they’ve been given,” Rosenberg said.

This summer Rosenberg and Yi-Frazier will test the efficacy of the PRISM model in a randomized trial and hope to offer a similar intervention model to parents.

“There is more to being sick than cells and biology,” Rosenberg said. “At Seattle Children’s our goal is to take care of the whole patient – physically and psychosocially.”

Resources:

  • New AYA Cancer Leader Helps Teens and Young Adults Balance Life with Cancer
  • Seattle Children’s Cancer and Blood Disorders Center
  • Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program
  • Seattle Children’s Endocrinology and Diabetes program
  • Center for Clinical and Translational Research