Transplant

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 »

United States Army Special Operations Command Lt. Col. Trevor Hill, flew to Seattle from his home in North Carolina to donate part of his liver to his 8 ½-month-old nephew, Hudson. Today, 2-year-old Hudson is thriving.

Hudson Hill was born with biliary atresia, a liver condition that affects a baby’s bile ducts. At only 2 months old, Jordan Hill’s beautiful blue-eyed baby with long brown locks was in dire need of a new liver. His only hope was a donor. Below, Jordan explains the hopelessness she felt after her son was diagnosed and why she now advocates for organ donation.

At 6 weeks old, my son, Hudson, was diagnosed with a rare liver disease. As parents, you do everything in your power to protect your children. Despite our efforts and optimism, we couldn’t protect Hudson from his failing liver. We faced a truth that no parent should: without a new liver, our son wasn’t going to survive and there was nothing we could do about it. At 12 weeks old, Hudson was officially placed on the national organ waiting list. As I reflect on how I felt that first year, I always come back to the same word: helpless. Read full post »

Picturing her daughter making it to her first birthday was difficult for Rachael Rowe as she watched her baby struggle to survive each passing day waiting for a liver transplant.

Time officially took its toll on Feb. 6, 2018 — four months after 10-month-old Raylee was put on the transplant waiting list.

“I remember it was 3:00 a.m. in the morning when I heard Raylee screaming in pain,” said Rowe. “Never in my life had I heard a baby cry like that before. It was terrifying.”

After spending three hours trying to comfort her normally smiley and happy baby, Rowe took Raylee to the emergency room near their home in Portland, Oregon.

Read full post »

At only 3 months old, Titus Sickles was brought back to life. Today, his family says they have a second birthday to celebrate: the day his new heart started beating for the first time.

“He’s a completely new baby,” said Rena Sickles, Titus’ mother. “He has a second chance at life now.”

In dire need of a new heart, Titus was listed for transplant at only 2 months old. Thirty days later, while Rena and her husband, Andrew, were leaving the hospital to go to dinner, they got a call.

“The call came and I just knew,” said Rena. “I looked at my husband and we just started crying.” Read full post »

At 4 months old, Raegen was diagnosed with congenital nephrotic syndrome.

Early on in Raegen Allard’s life, her mother, Francisca Allard, noticed something wasn’t quite right with her beautiful daughter. Raegen would seem upset after she ate and her stomach was enlarged. She also had a bruise around her belly button, which worried Allard further. At 4 months old, Allard took her daughter to the emergency room closest to their home in Snohomish. They told Allard she needed to be taken immediately to Seattle Children’s Emergency Department. When they arrived they received unexpected news: they weren’t going home. Raegan was admitted to Seattle Children’s Neonatal Intensive Care Unit (NICU).

Raegen was diagnosed with congenital nephrotic syndrome, a kidney condition that begins in infancy and typically leads to irreversible kidney failure (end-stage renal disease) by early childhood.

“I didn’t know what to do,” said Allard. “It was like I was watching life unfold in front of me and I had no control. All I could do was hold her hand. It was a whirlwind.” Read full post »

With 2018 in full effect, On the Pulse is taking a moment to hit rewind to share five stories that might have floated beneath the flurry of headlines in 2017.

We invite you to take a look back at some of last year’s stories that inspired us and gave us hope.

1. A Mother’s Intuition Leads to Picture-Perfect Treatment of Eye Cancer

Courtesy of Amanda De Vos Photography

Amanda De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention.

De Vos would learn that the photo she took of Julia would help to identify a rare eye cancer, retinoblastoma, that was stopped in its tracks with an innovative treatment at Seattle Children’s.

Read full post »

Hudson received a portion of his uncle’s liver in July as part of a living donor liver transplant.

Jordan and Morgan Hill carry with them everywhere a custom-made coin inspired by their son’s liver transplant and the man who saved his life.

Morgan had the coin made weeks before his older brother, United States Army Special Operations Command Lt. Col. Trevor Hill, flew to Seattle from his home in North Carolina to donate part of his liver to his 8 ½-month-old nephew, Hudson.

“My brother saved our son’s life,” Morgan said. “Trevor has had what is called a challenge coin throughout his military career. It’s a sign of respect. It’s a symbol of someone’s unit and their life, and I wanted him to have one representing the incredible gift he gave us.” Read full post »

Dr. Alex Kula is a resident at Seattle Children’s. As a young adult, Kula was the recipient of a life-saving living liver transplant.

As a resident at Seattle Children’s, Dr. Alex Kula brings a unique perspective to patient care: his own history as a youth with a serious illness.

Here Alex shares how his uncle gave the ultimate gift, and why the experience drives him to help sick children live healthy and fulfilling lives.

I was 15 years old and a normal teenager: living in Phoenix, hanging out with my friends at school and running with the cross-country team.

Then a mysterious autoimmune storm interrupted the normalcy of my life. It left me with type 1 diabetes, ulcerative colitis and an inflamed liver. Blood tests later revealed primary sclerosing cholangitis (PSC), a disease of the bile ducts, as the cause of my liver inflammation.

Prior to this, I had never really been sick — which was fortunate, considering how much I hated to go to the doctor. However, I quickly came to appreciate the complexity and wonder of medicine. Read full post »

Wade Washington underwent a kidney transplant at Seattle Children’s in 2013 and is now a student at the University of Washington with career aspirations of working in healthcare.

Growing up, 19-year-old Wade Washington knew he’d one day need a kidney transplant. The question was never if, but when.

“I never really knew what normal was,” said Washington. “I was born with chronic kidney disease, and so it was what I was used to.”

As a child, Washington’s condition was manageable, but as he grew up his condition worsened. As Washington hit puberty, his kidneys began to fail.

“Wade was born with renal dysplasia, a congenital malformation of his kidneys,” said Dr. Andre Dick, surgical director of the Kidney Transplant Program at Seattle Children’s. “Once he entered puberty, his kidneys couldn’t meet his body’s metabolic demand. We knew he’d need a transplant.” Read full post »