In recognition of Spina Bifida Awareness Month, Whitney Stohr penned an open letter encouraging inclusion. She asks people to join her in celebrating our unique differences and to see her son for the extraordinary child he is.
Whitney and her husband, Jason, found out their son Malachi would be born with spina bifida when she was 19 weeks pregnant. Whitney said the moment they walked through the doors of the hospital they knew they were in the best place possible to give Malachi the best care possible. Whitney and Jason call Seattle Children’s a second home. The Stohr family moved from Yakima to Lynnwood to be closer to the expert care Malachi needs at a moment’s notice, offering them much-needed peace of mind at a time when there’s so much uncertainty.
In total, their family spent more than 380 days at Seattle Children’s, helping Malachi overcome tremendous hurdles. Today, in the midst of a pandemic, Malachi’s healthcare needs remain complex and require seamless coordination amongst his many providers at Seattle Children’s, the only nationally ranked standalone pediatric hospital in the Pacific Northwest.
Malachi’s incredible, ongoing medical journey is only part of their story. Whitney says she hopes people see the bright future Malachi has ahead of him. Read full post »
Greta Oberhofer, now 7 years old, was the first patient under age 2 included in Seattle Children’s cancer immunotherapy clinical trials. Her parents once considered hospice care for their 13-month-old daughter. Now, Greta has been in remission for six years.
In the fall of 2013, Maggie and Andy Oberhofer watched their tiny, 8-month old daughter, Greta, fight for her life in the Pediatric Intensive Care Unit (PICU) at Doernbecher Children’s Hospital in Portland, Oregon.
Greta had just been through a bone marrow transplant to treat her highly aggressive leukemia. Shortly after, she took a turn for the worse and spent a perilous month in the PICU.
Greta eventually recovered from the transplant and was able to go home, but the family’s reprieve only lasted three months. In March 2014, Greta’s cancer relapsed. Her chance of survival was now 10% or less.
Her parents couldn’t imagine dragging Greta through another bone marrow transplant, so they began to consider end-of-life care for their 13-month-old daughter.
“It was gut-wrenching, knowing her odds were so low,” Maggie said. “We were preparing ourselves to say goodbye to her.”
That’s when they learned about a new option — a cancer immunotherapy trial at Seattle Children’s. Read full post »
When Victoria Reece found out she was pregnant, she and her husband were elated. During their 20-week ultrasound, they found out they were having a boy and left the appointment over the moon with excitement, envisioning a bright future as a family of three with their baby boy in tow.
The next day, they received an unexpected call.
“That’s when the chaos began,” Reece said.
The couple went back for more ultrasounds and their baby was diagnosed with a bilateral cleft lip and palate.
“We were really scared,” Reece said. “I had so much anxiety about it.” Read full post »
Twins Melody (top) and Lyric Allen were born amidst the COVID-19 pandemic. Melody, like her mother, was born with a condition called craniofacial microsomia and needed care through in-person and telehealth appointments provided by Seattle Children’s Craniofacial team in the immediate days, weeks and months following her diagnosis.
Just weeks after the state of Washington went under shelter-in-place guidelines, Jenalysse Renaud gave birth to two beautiful babies on April 17, 2020. Renaud and Donovan Allen, the twins’ musician father, named them Melody and Lyric.
Melody, a whole two minutes older than her little brother, faces a few challenges. Her left eye is smaller than her right and is being monitored for potential blindness. In addition, she likely has hearing loss or deafness in one ear, all features of hemifacial microsomia. After several tests, she was also diagnosed with malrotation— an abnormality in which the intestine does not form in the correct way in the abdomen—at just a month old. Thankfully, she shouldn’t face any prolonged consequences from that diagnosis after undergoing corrective surgery in May.
Renaud herself was born with hemifacial microsomia, the same condition Melody now faces. Craniofacial microsomia, also known as hemifacial microsomia, is a congenital condition in which the tissues on one side of the face are underdeveloped—as well as some hearing loss. Renaud was also born with a solitary left kidney. Read full post »
Despite a lifetime of medical setbacks, you’ll almost always find 18-year-old Grace Carney smiling.
Grace Carney was 16 years old when she first began falling. Before long, she was falling every day. It got so bad that she had to rely on other people — family members at home and aides at school — to help her walk.
For Grace, this was the latest in a lifetime of medical setbacks, many of which stem from neurofibromatosis type one (NF1), a genetic disorder that causes tumors to grow all over the body, including under the skin and on the nerves.
To improve Grace’s ability to walk, a doctor in Spokane recommended a major orthopedic surgery. But as the Carneys prepared for that surgery, an MRI result flipped everything upside down and brought them to Seattle Children’s, where Grace received an innovative medical treatment that changed her life and could do the same for countless others with NF1. Read full post »
The patients at Seattle Children’s inspire. Through their tremendous stories, we have the opportunity to learn about what it means to be brave—what it means to persevere. Monumental accomplishments demand to be celebrated.
Over the years, Seattle Children’s has had the honor of sharing the incredible stories of our Patient Ambassadors. Several of those that already shared their personal and trying stories have reached a new milestone: graduation. Though 2020 has been one of the most challenging years in decades, the tremendous accomplishments of our patients are all the reason to celebrate.
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In honor of LGBTQ+ Pride Month, Seattle Children’s patient Iris shares her story as a self-identified transgender woman and offers advice on how you can support the mental health and well-being of other transgender youth.
In July, Lisa picked up her 17-year-old, who had been identifying as gender non-binary, from summer camp. When her teen got into the car, they had news.
“I want to change my name to Iris and I am going to use feminine pronouns from this point forward.”
Lisa remembers her light-hearted response. “I just said, ‘Okay. But you may have to give me a minute to adjust.’”
For Lisa, this was not a tremendous, earth-shifting announcement. It was just another opportunity to support her daughter’s journey of self-discovery.
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I have worked at Seattle Children’s for 16 years and have been the Chief of Critical Care Medicine since 2013. My son Peter just turned 17. He recently “celebrated” his birthday at a therapeutic boarding school where he is in residential treatment for anxiety and depression. Although he was in and out of outpatient therapy for several years and was hospitalized at the Seattle Children’s Psychiatry and Behavioral Medicine Unit (PBMU) for severe depression at age 13, I rarely discussed his mental health with my colleagues. Most of the people I worked with regularly were unaware that coping with Peter’s anxiety and depression was part of my daily life. I used to think it was something private to keep to myself. However, I now realize it was my inability to address my own fear that kept me silent. I retreated into my job, and, at work, I could be the confident physician and ICU leader rather than the uncertain, anxious parent who didn’t know how to help his struggling son.
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My teenage son, Jonathan, and I recently visited Seattle Children’s in April for an ophthalmology appointment.
As a parent, I was feeling very concerned about going to the hospital during this time, as my son has an ongoing health issue. When the scheduler called to reschedule his appointment, she told us that they were doing this for safety measures. I proceeded to ask her a lot of questions about safety protocols and she took the time to answer all of my questions. She didn’t rush me. I felt better after talking to her.
When we arrived at the entrance, there was a nurse that stopped us outside and asked us some questions. We got our temperature taken and were given the go ahead to go into the building.
Once inside, many people we saw were wearing masks. I immediately felt better about being in the hospital.
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My two-year-old son Malachi is a medically-complex Seattle Children’s kiddo and a “frequent flyer” here at the hospital. We visit the hospital often—for clinic appointments, routine procedures, sicknesses and medical emergencies. Malachi was diagnosed with Spina Bifida before he was born. He had several lifesaving operations in his first few months with us including spine and brain surgeries on his first two days of life.
Moving to get the care we needed
Malachi, his dad, and I currently live in Auburn, Wash., however we didn’t always live in Auburn. We moved from Yakima to be closer to the care Malachi needs. After two emergency air flights in two weeks just after Malachi’s first birthday, we made the decision to relocate to Auburn.
Like most parents who have medically complex kids, we were kind of pros at social distancing even before COVID-19.
As the parent of a medically complex kiddo, the current pandemic is especially concerning. We were especially cautious early this spring as news of the impact of the virus began to spread. We went into complete isolation—no one in or out of our home—on March 12. Like many parents in our situation, my husband and I were intent on doing everything possible to avoid a hospital admission. We both began working from home. We cancelled all clinic appointments and, instead, opted for telemedicine appointments with my son’s providers. Telemedicine has been so incredibly helpful for us but some things demand in-person care.
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