Kristin Jarvis Adams (back right) found different forms of support when her son Andrew (bottom right) was diagnosed with autism, and then years later when he battled a rare immune disorder. Also pictured are her husband, Jon, and daughter, Hannah.
The proverb that suggests it takes a village to raise a child can be easily adapted for parents facing the various challenges that come with having a child with special needs and circumstances. Parents sometimes need the support of a village. Author Kristin Jarvis Adams shared her experiences with On the Pulse in finding her village when her son, Andrew, was diagnosed with autism and years later, when he was treated and overcame a rare immune disorder at Seattle Children’s and Seattle Cancer Care Alliance. Adams, who is a member of the Autism Center Guild at Seattle Children’s, tells her family’s story in her book The Chicken Who Saved Us: The Remarkable Story of Andrew and Frightful.
For 10 years my husband and I had been making trips to and from Seattle Children’s with our autistic son, Andrew, who suffered from an unheard of progressive inflammatory disease. Andrew had been in the hospital for months, his body riddled with gaping ulcers, his organs compromised by chronic inflammation. Now we were in the middle of chemotherapy and radiation treatments that were preparing him for an experimental bone marrow transplant. It was our last hope.
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Olivia was born with a rare disease of the liver.
Patricia Alva knew, even before her baby girl was born, that something was wrong. When she was pregnant, doctors detected a cyst on the baby’s stomach during an ultrasound.
“It was heartbreaking,” said Alva.
After she was born, doctors diagnosed baby Olivia with biliary atresia, a rare disease of the liver. It occurs when a baby’s bile ducts do not form normally. It occurs in about 1 in every 15,000 babies. Read full post »
Kaden Hollis, now 11, received a lifesaving liver transplant when he was nearly 2 years old.
In honor of Donate Life Month, On the Pulse shares an inspiring story of a mother and her son that symbolizes the true act of ‘paying it forward’. Kaden Hollis was only 1 years old when he underwent a lifesaving liver transplant. Throughout Kaden’s journey, his mother Cindie knew that although the gift of life her son received could never be paid back, it could be paid forward — which is what she did when a friend was in desperate need.
Kaden Hollis was just 3 months old when his mother, Cindie Hollis, began noticing signs that indicated her baby was not well.
The whites of his eyes were turning yellow, which quickly spread throughout his entire body. He had a constant itch that resulted in awful cuts all over his delicate skin from the scratching. It was evident that Kaden had a severe case of jaundice. After numerous doctor visits and careful monitoring of his condition over the next several months, Kaden’s health was not improving. To find the answer to what was causing her son’s worrisome condition Hollis went to Seattle Children’s Hospital when he was 13 months old.
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Trevor was born with rare disease called maple syrup urine disease. Seattle Childrens transplant program is one of six centers in the country to offer transplantation for children with MSUD.
Only a week after giving birth to twins, a girl and a boy, in July of 2008, Annette Cole’s world was turned upside down. Something was wrong with her baby boy, Trevor Clemons. In his first couple weeks of life he was lethargic, irritable and couldn’t keep any food down. She was overwhelmed with fear as doctors delivered the difficult news.
The diagnosis felt as unreal as the name of the disease sounded: maple syrup urine disease (MSUD).
“We couldn’t believe it,” said Cole. “When we first found out about the disease, we had never heard of it before. We didn’t know what to expect. We didn’t know anything.” Read full post »
At only 8 months old, Lincoln Seay, has spent the majority of his short life inside the walls of hospitals. This week, however, marks the start of a new chapter: he is finally going home, or at least he’s one step closer to his home back in Alaska.
Only 21 days after receiving a life-saving heart transplant at Seattle Children’s Hospital, Lincoln was discharged from the hospital with a new heart and a new lease on life.
“We’re so excited,” said Rob Seay, Lincoln’s father. “As a family it’s been a big celebration since we were discharged. We’re finally all under one roof again. It’s a tremendous blessing.” Read full post »
McKinley with her twin brother.
In honor of World Kidney Day, On The Pulse shares the inspirational story of 5-year-old McKinley Miller who was born with just one kidney that did not develop normally. “She’s our little miracle,” said McKinley’s mother, Jennifer Miller. “We want other people to know there’s always hope. All you have to do is look at McKinley and see what she’s overcome.”
When Jennifer Miller learned she was expecting twins she was overjoyed. Unfortunately, Miller’s joy quickly turned to uncertainty. At her 20-week ultrasound, Miller was told something was wrong with one of the babies.
“I could tell they were looking for something that wasn’t there,” said Miller. “I knew something wasn’t quite right.”
Baby McKinley was prenatally diagnosed with kidney disease and was missing one kidney. She suffered from a rare combination of complex developmental problems affecting multiple organs in her body, including her kidneys, heart and rectum.
“We chose to stay positive,” said Miller. “We were told we may lose her, but I refused to focus on that possibility. I kept focusing on having both my babies.” Read full post »
Seattle Children’s is launching a pilot with Health123 for a digital program that focuses on follow-up care for transplant patients.
Transplant day is a joyous milestone for children and families who’ve been through a difficult illness. But the healing does not end when the new organ is in place—in fact, that is when the real work begins, according to Dr. Jodi Smith, Medical Director for the Kidney Transplant Program at Seattle Children’s.
“One of the biggest factors in a successful transplant is for the patient to follow a careful regimen afterwards so the new organ can do its job,” said Smith. “Patients often struggle to maintain their health after a transplant and need extensive support.”
To help with this problem, Dr. Smith’s transplant team is working with Dr. Jane Dickerson and Dr. Michael Astion from the Department of Laboratories on a pilot for a digital program from Health123 that focuses on the follow-up care for transplant patients at Seattle Children’s, which has one of the highest-ranked kidney transplant programs in the country. Read full post »
Aaden Adams with his parents, Cheree and Andrew Adams
Aaden Adams remembers waking up in his room in the Cardiac Intensive Care Unit (CICU) at Seattle Children’s Hospital and asking for red Popsicles.
“Everybody wanted me to talk and I wanted a red Popsicle,” said the precocious 6-year-old with a face full of freckles. “So I asked for Popsicles. Do you remember that, Mom?”
“Yes, we remember that well,” answered Aaden’s mom, Cheree Adams. “That was a good day. That was the day we knew that you were on the right path. We knew that you were coming back to us.”
Just two weeks prior, Aaden, who was born with a congenital heart defect, was so near death that his parents were preparing themselves for the reality that he might not make it out of the hospital. It was a situation they had not even considered.
“He came here for a pretty minor procedure,” said Andrew Adams, Aaden’s father. “He was supposed to be in and out of the operating room, but then his body just shut down. His heart wouldn’t restart.”
Dr. Erin Albers, Aaden’s attending cardiologist, said the complication was so unusual that no one on the care team had seen it before. Read full post »
Parker Rana, 15, has truly overcome the odds to get to where he is today. Born with multiple heart defects, Parker grew up in and out of the hospital. But now, he’s a thriving teenager with an incredible story of hope.
Below is Parker’s story: from hospital bed to trackside, cheering on his favorite racing team, The Heart of Racing.
An unexpected delivery
Jaydine Rana, Parker’s mother, was expecting a healthy baby boy when she delivered Parker on June 2, 1999 in Mt. Vernon, Wash. Unfortunately, she got some unexpected news that day. Parker was born with a combination of four heart defects – a hole in his heart, a missing pulmonary artery and valve, an enlarged ventricle and an overriding aorta. He was airlifted to Seattle Children’s Hospital shortly after birth for treatment. Read full post »
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 120,000 people in the U.S. are on the waiting list for a lifesaving organ, and sadly, more than 21 people die each day waiting for a transplant. For some, becoming a donor and the transplantation process can seem daunting, but the impact on a recipient’s life is invaluable.
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. Read full post »