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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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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4-year-old Stella Allison underwent a kidney transplant in early 2022 at Seattle Children’s
“She has so much more energy and is eating so much more. She is also moving and walking more than she ever did.”
Four-year-old Stella Allison has always loved telling jokes and playing dress up.
With energy that is contagious and a smile that lights up a room, her mom Kyley Barthlow says Stella has grown into a high-spirited and chatty child – but was born a real fighter.
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April marks National Donate Life Month, a time devoted to spreading awareness about the tremendous need for increasing the number of organ, eye and tissue donors. According to the United Network for Organ Sharing (UNOS), more than 100,000 people in the U.S. need a lifesaving organ.
One organ and tissue donor can save or enhance more than 75 lives. Anyone can be a potential donor. Registering with the national registry and sharing your decision with your family ensures that your wishes are carried out. You can also be a living donor by choosing to give an organ or part of an organ to someone in need through organ donation.
Seattle Children’s has one of the best and busiest pediatric transplant centers in the nation, working across a six-state region to provide lifesaving organ transplants for patients. Seattle Children’s Transplant Center is one of the few in the world that performs living donor liver transplants, is one of the top five kidney transplant centers in the U.S. and also has some of the best survival outcomes in the nation for pediatric liver, kidney and heart transplants.
Dr. André Dick, senior vice president and surgeon-in-chief, who also serves as surgical director of the pediatric kidney transplant program, took time this month to talk about his journey to where he is now, what he does in his role at Seattle Children’s, and his priorities for the years ahead. Read full post »
The Hurtados enrolled their children in the Studies in Pediatric Liver Transplant (SPLIT) database which follows children who receive a liver transplant in the U.S. or Canada. They hope researchers will use this information to help other families like theirs.
Having one child in need of a liver transplant can be tremendously challenging for a parent. Eugenia and Justino Hurtado have four.
All four of the Hurtado children were born with Maple Syrup Urine Disease (MSUD) — a rare genetic metabolic disorder in which the body is unable to break down certain parts of proteins due to an enzyme deficiency. The disease can lead to a buildup of toxic substances that cause organ and brain damage.
Adolescents and adults with MSUD are also at risk for attention deficit disorder, anxiety and depression. Infections, stress, surgeries and injuries can lead to neurological damage at any age.
People with MSUD get most of their nutrients from a prescribed liquid formula. They can eat some low-calorie foods but must be very careful. If they stray from the diet, they can experience muscle spasms, breathing failure, intellectual and developmental disabilities or even coma. Read full post »
Amanda and her daughter, Amelia, have both been treated at Seattle Children’s for Alagille syndrome.
When Amanda Thorlacius found out she was pregnant with a little girl, she was overjoyed. But she wondered if her daughter would inherit the same genetic condition that robbed her of a normal childhood.
“Give me all the diseases in the world, but don’t give Alagille syndrome to my children,” Amanda said.
Alagille syndrome (ALGS) is a rare, inherited condition in which children may have too few bile ducts in the liver. This causes problems with the way bile moves and makes it hard for the body to remove toxins.
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Dr. Evelyn Hsu, Seattle Children’s Division Chief of Gastroenterology and Hepatology, wants to ensure racial equity in transplants.
Seattle Children’s recently named Dr. Evelyn Hsu the division chief of Gastroenterology and Hepatology. For more than a year, Hsu was the acting chief while a national search was conducted.
In this interview, Dr. Hsu talks about her extensive medical career, her vision for the future and what hope, care and cures mean to her. Read on to hear more about her incredible journey and her passion for helping children live the most fulfilling life possible.
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Photo credit: Kelsey Adrienne Photography.
Janessa Felt watched helplessly as her 2-year-old daughter’s sunny disposition began to fade away. Charlotte’s bright smile and infectious laugh usually hid her struggle well, but that façade was cracking. Charlotte was getting sicker, which was evident by her yellow skin, the silver highlights in her hair and her large distended belly. Her piercing blue eyes were sadder than usual. She laid cradled and uncomfortable in her mother’s arms as fluid built up in her abdomen. Her liver was failing her.
Charlotte was admitted to Seattle Children’s a week earlier. Hospital stays weren’t abnormal for them, but this time was different.
“It is hard to watch your baby be so sick, hooked up to so many machines, and not be able to do anything,” Janessa said. “As a mother, you want to be able to take that pain away.”
Janessa didn’t know how much longer Charlotte would be able to wait for a miracle. She had been on the waitlist for a new liver for year already.
“It wasn’t scary until recently,” Janessa said. “Now, it’s clear she needs a new liver. We just want her to start feeling better. It’s heartbreaking to watch her go through this.” Read full post »
On July 10, 2018, Avery Crawford entered the world – a beautiful and seemingly perfect baby girl. Little did anyone know about the battle that was secretly raging in her tiny body as her heart struggled to do its job.
Avery was a miracle to her parents, Elaine and Jordan Crawford. Their 7-year-old son, Quincy, had always wanted a little brother or sister, but doctors said it wasn’t possible. Years went by and they began to lose hope. Then one day, out of the blue, their dream came true. Elaine was pregnant.
“She was a gift,” said Elaine. Read full post »
Just two days before he got sick, Adrian Peterson was practicing martial arts – a typical activity for the active 17-year-old who regularly biked, climbed and hiked. But that all changed in October 2018, when Adrian woke up feeling congested and nauseous.
“That was the only forewarning I got for what was to come,” Adrian said.
At first, doctors in Fairbanks diagnosed Adrian with the flu. However, about two weeks later, doctors at an urgent care center discovered Adrian had something more. He was sent to an emergency room with acute heart failure.
“My next memory was waking up while being toted over to an ambulance. I was told that we had to fly to Seattle Children’s,” Adrian said. “I fell asleep on the flight, and the next thing I knew I was in Seattle with an IV line in my neck.”
Adrian was diagnosed with dilated cardiomyopathy, which is when the heart is severely weakened and it becomes enlarged.
“It was completely unexpected,” Adrian said. “All I knew was that I wanted to be healthy again.” Read full post »