Logan (left) and Connor Brown at Turnagain Arm in Alaska. The brothers have both received kidney and liver transplants at Seattle Children’s.
“I hate to tell you this, but your son needs a kidney transplant.”
Those words left Rob and Patty Brown dumbstruck.
It was October 2008. That day their 6-year-old son, Connor, had complained that his feet were cramping during hockey practice. Later that evening, his hands and feet completely locked up — a condition called tetany.
“We raced him to the emergency room thinking it was just something silly,” Rob remembers.
It wasn’t something silly. Connor was diagnosed with nephronophthisis, a rare genetic disorder that leads to kidney failure.
Little did the Browns know this was just the beginning of a long and frightening journey, not only for Connor but for their younger son, Logan, as well — a journey that would lead to four transplants and would test their strength as a family.
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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 »
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.
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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.
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.
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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 »