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 »
On Thursday nights this summer, 7-year-old Arabelle Laddusaw is saddling up alongside other children and teens to compete in the Tomorrow’s Rodeo Champions’ summer rodeo series in her hometown of Billings, Montana. As she sits up straight and grips the reins of her horse in anticipation of the chute opening, her cerebral palsy is the last thing slowing down the thrill of events such as barrel racing, pole bending and the crowd favorite, goat tail tying.
However, the prospect of being able to sit naturally on a horse wasn’t always a future possibility for Arabelle who was diagnosed at birth with cerebral palsy, a neurological condition that affects muscle movement and limits mobility.
As a toddler, the muscles in Arabelle’s legs were so tightly wound they would scissor – one leg twisting over the other – making it difficult for her to stand upright or simply straighten her legs out in front of her when sitting.
“With her, it was challenging because she required constant assistance,” said Arabelle’s mother, Christine Laddusaw. “She wasn’t just a normal child that you could put down and let play.” Read full post »
Grayson, wearing his black and white “Chucks,” weighed 1 pound when he was born. He overcame several life-threatening conditions while in the Seattle Children’s NICU and is now back home with is parents in Idaho.
For Leslie and Jeremy Barnett, Grayson’s black and white Converse Chuck Taylors represent a happy ending to a tough first chapter of life for their son, who weighed just 1 pound when he was born 18 weeks premature last November.
It took eight months and overcoming tremendous adversity for Grayson to grow into the tiny shoes he received the day before his 117-day stay in the Seattle Children’s neonatal intensive care unit ended.
“We were told that Grayson had this Mt. Everest of health challenges to climb,” Leslie Barnett said, recalling a conversation with Seattle Children’s and University of Washington neonatologist Dr. Maneesh Batra when her son was a few days old.
Brennan Henderson was born 3 months premature with a host of debilitating health issues, including necrotizing enterocolitis (NEC), a condition that affects the intestines.
It’s common for parents of young children to worry about the unexpected accident that may occur while they’re out in public. But for the Henderson family, being prepared for the unexpected was something that lasted well beyond the early years of childhood.
Whether it was attending a family gathering or simply dropping by the grocery store, there was always a looming concern around when their youngest son, Brennan, may have his next vomiting or bowel incontinence episode.
“There were times when we would go to a restaurant and have to cover him with a blanket,” said Brennan’s mother, Gloria Henderson. “We did it to muffle the sound of him vomiting into a bag. It felt awful having to do it, but it was the only option we had.”
Brennan was born 3 months premature with a host of debilitating health conditions, including necrotizing enterocolitis (NEC).
Life did not start out easily for Emmett Seymer. He and his twin brother, Dashiell, were born at 29 weeks in Allentown, Pennsylvania. Emmett spent the first 30 days of his life on a ventilator because his lungs were underdeveloped. Doctors at the hospital had little optimism for Emmett and told his mother to prepare herself for him to pass away.
After 180 days in the neonatal intensive care unit (NICU), Emmett was able to join his brother at home. Though he had significant difficulty breathing and an inability to swallow normally, he was finally stable enough to get out of the hospital.
Daisie Losee had a rough introduction to the world. Her mother, Melissa, struggled to deliver her sixth child at an Idaho hospital. During the birth, Daisie suffered two injuries. Her broken right arm was discovered as they changed her clothes for the first time. Doctors tried to put a splint on her tiny bone, but the break between the shoulder and elbow was in such a small area that it was difficult to keep stable. The doctors had to improvise and make a sling that held her fist against her sternum to let the bone heal.
The second injury, brachial plexus, was more mysterious. Neither Cory nor Melissa Losee had heard of that condition. For the first month after Daisie’s birth, she had no movement in her left arm and hand. The Losees saw five different doctors at the hospital in the first seven days of Daisie’s life. None of them talked about the injury to the left arm and the Losees were unsure what was happening with their newborn daughter.
From his appearance alone, 3-year-old Hamilton McNamee looks like a typical kid. He is rambunctious and playful with strawberry blonde hair and a mischievous smile.
As he climbs on the tables and chairs in Starbucks at Seattle Children’s Hospital, his mother Claire casually states, “He’s going to wander around a little. It’s fine.”
What’s different about Hammie, as his family affectionately refers to him, is that he has a condition known as tuberous sclerosis complex (TSC), a rare genetic disease that causes tumors to grow in various parts of the body, including the brain and other vital organs. Though the tumors are benign (which means they aren’t cancerous), they impact a child’s development in a variety of ways depending on where they grow and how big they get.
At age 2, Hammie experienced some seizure-like behavior after a bout with hand, foot and mouth disease. His primary care provider referred Hammie to Seattle Children’s First Seizure Clinic where tests revealed that he had growths in his brain and he was diagnosed with TSC.
Twins Hendrix (left) and Harper were diagnosed with SMA Type II in summer 2015. They have made tremendous progress since beginning a breakthrough treatment in February 2017 at Seattle Children’s.
Spinal Muscular Atrophy (SMA) had progressively taken away the strength of 3-year-old twin brothers Harper and Hendrix to lift a cup of water, crawl or even take a deep breath on their own. Without access to a breakthrough treatment for the incurable genetic condition, the regression of their motor skills was certain to continue, potentially to the point that it was life-threatening.
So moments like the one that unfolded between Harper and Hendrix in a Seattle Children’s recovery room shortly after their fourth infusion of the new SMA drug, Spinraza, represented much more than brotherly play to their parents, Crystal and Noe Ramos.
Harper raised his right arm high above his head and paused briefly before snapping it down in front of him as he released a makeshift ball of medical tape and paper. The object bounced and then skidded on the floor before it came to rest near Hendrix, who gave it a casual glance before returning his attention to the iPad in his lap he gripped firmly with his fingers.
When Aidan Pintuff was 4 years-old, he awoke to find the right side of his jaw swollen, red and very sore. Living in Virginia at the time, Aidan’s parents took him to the emergency room where he was given antibiotics. The swelling and pain went away and the family moved on, but they had no definitive answer on what caused the condition.
As Aidan grew up, symptoms would flare up from time to time, particularly if he was hit in the face. Their local doctor had initially diagnosed him with cellulitis. Aidan continued to live his life as a young boy, doing all the things that an active child would do like wrestle with his brother, play sports and participate in the boy scouts.
Josie, with her father, Luis, first came to Seattle Children’s when she was 2 months old.
Josie came to Seattle Children’ Emergency Department when she was 2 months old after acquiring a virus and going into respiratory distress. She was also in the beginning stages of heart failure.
Statistically, she was lucky to have made it that far.
Before birth, Josie was diagnosed with Trisomy 18, a life-threatening condition caused by an extra chromosome that disrupts the typical pattern of development in significant ways. Only about 5 to 10% of children with Trisomy 18 survive beyond their first year of life.
“I didn’t expect her to live that long,” said Josie’s mother, Jenny Castillo. “I hoped we would at least have a few days or weeks with her, and we’ve been thrilled with all the time we’ve had.” Read full post »
