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3-D Simulation Before Difficult Surgery Helps Erin Breathe on Her Own

September 14, 2017  |  Patient Care, Patient Stories Post Comment

Dr. Kaalan Johnson leads his team through a surgical simulation

Erin McCloskey, 11, has been a regular at Seattle Children’s her entire life. First diagnosed with a rare heart defect, a genetic specialist at Seattle Children’s later discovered she had fibrodysplasia ossificans progressiva (FOP). FOP is a complex condition that turns tissue, ligaments and tendons into bone that is outside the typical skeletal structure. Eventually, a person’s joints lose their mobility and it can cause breathing, movement and eating difficulties.

In August, Erin’s mother, Suzanne, sat with her in her hospital room as she did almost every minute of every day since April. Erin’s bed was stacked with stuffed animals and cards sent from members of the online FOP community who showered her and her family with support.

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Twin Breathes Easier After Throat Surgery

July 12, 2017  |  General, Patient Care, Patient Stories, Pediatric Surgery 1 Comment

Emmett Seymer taking steps toward a diagnosis

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.

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Girl Overcomes Birth Injury

July 5, 2017  |  General, Patient Care, Patient Stories, Pediatric Surgery Post Comment

Daisie Losee

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.

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Driven Mother Confronts Son’s Rare Diagnosis

June 27, 2017  |  General, Neurosciences, Patient Care, Patient Stories Post Comment

Hamilton McNamee enjoys a snack.

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.

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Boy Scout Gives Back After His Struggle With Rare Condition

June 20, 2017  |  General, Patient Care, Patient Stories 2 Comments

The Pintuff family

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.

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Compassionate, Coordinated Care at Seattle Children’s Gender Clinic

May 9, 2017  |  General, Patient Care, Patient Stories Post Comment

Jay waits for his appointment at Seattle Children’s Gender Clinic

Sitting unassumingly on the exam table, Jay’s feet dangle above the floor and his hands are folded in his lap. He displays a warm smile when asked how he’s doing. His mother, Cynthia, looks at her son with an overt sense of pride and the type of love that needs no words to express its presence.

Jay is awaiting the arrival of the Gender Clinic care team and as his appointment draws near, he talks about what life is like as a 10th grader in the Seattle area and his hopes for his future. As his father and brother before him, Jay wants to go into the armed services. His particular branch of interest is the Air Force and he wants to go through officer training at West Point.

Assigned female at birth, Jay also talks about his desire to fully transition to the male gender that he has identified with since he was a baby and the challenges that it presents, especially at his young age.

Cynthia, a cancer survivor herself, knows all about taking on challenges. Her experience as a patient taught her about the medical system.

“I know how important it is to be your own advocate,” she said. “I am so proud of Jay for his bravery in being his own advocate and taking control of his own medical decisions.”

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Finding Hope, Life-Changing Care 2,200 Miles From Home

May 8, 2017  |  General, Patient Care, Patient Stories 1 Comment

Alexis, a 7 year-old vascular anomalies patient from Indiana

By the time Alexis Stringer was 7 years-old, she had already undergone a lifetime’s worth of medical procedures; 47 of them to be precise.

Alexis was born with purple areas on her face and neck. At first, doctors thought it was due to birth trauma. But over time, when Alexis was 7 weeks old, doctors determined she instead had a series of blood and lymph vessels that were not developing properly, which are known as vascular anomalies.

The traditional treatment for this disfiguring condition meant that Alexis underwent a procedure called sclerotherapy where chemicals are repeatedly injected into the veins to make them shrink. The procedure can be painful and has to be performed several times under general anesthesia. In addition to the risks associated with repeated anesthesia, sclerotherapy came with additional risks as the high dose of the substance injected has the potential to destroy healthy tissue and even stop one’s heart.

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Preventing Throwing Injuries in Young Athletes

March 16, 2017  |  General, Health and Safety, Orthopedics and Sports Medicine, Patient Care Post Comment

Young pitchers can avoid throwing injuries by following some simple guidelines.

According to The American Journal of Sports Medicine, more than 15 million people will be playing baseball and softball this spring and summer, nearly 5.7 million of which are children in eighth grade or lower. Dr. Michael Saper, an orthopedic surgeon and sports medicine specialist at Seattle Children’s, has some useful information about how young players can avoid arm injuries.

Before joining Seattle Children’s, Saper trained under Dr. James Andrews, a renowned orthopedic surgeon who has treated many professional athletes, including hall of fame pitchers Nolan Ryan and John Smoltz. It was in working with Andrews that Saper developed his passion and expertise for the treatment and prevention of throwing elbow and shoulder issues.

Saper noticed injuries that were common in high-level athletes occurring in younger athletes and realized that education about how to stay healthy is just as important as treating the patient after a serious arm injury occurs.

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The Comfort of a Diagnosis and Knowing You Are Not Alone

March 7, 2017  |  Patient Care, Patient Stories 2 Comments

Emmy Anderson and her daughter Wren sharing a happy moment

When your child is sick with a rare condition that can’t be named, the search for an answer can seem frustrating and hopeless. For Kirk and Emmy Anderson, navigating the lengthy diagnostic process for their daughter, Wren, was something they endured with the hope that an answer would eventually come.

By about 6 months of age, Kirk and Emmy noticed that Wren was not meeting her developmental milestones. After a febrile seizure led to a stay in in Seattle Children’s Neonatal Intensive Care Unit (NICU), they received the news that a brain MRI showed Wren had a decrease in the amount of white matter in the brain, as well as a fluid filled sack growing between her brain and spinal cord. Despite the findings, doctors didn’t yet know what was causing these issues to arise.

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