Authors: Alyse Bernal
Update: In January 2020, the New England Journal of Medicine published results from the completed PENUT (Preterm Epo Neuroprotection) Trial. The study found that erythropoietin (Epo) treatment administered to extremely preterm infants did not result in a lower risk of neurodevelopmental disabilities when tested at 2 years of age. Babies receiving Epo as part of the study required less transfusions in volume and number, resulting in a lower exposure to blood donors. Other research underway continues to study the use of Epo to treat term babies whose brains did not get enough oxygen at birth (asphyxia).
No soon-to-be parent ever wants to think they may meet their baby too soon, but this is unfortunately the reality for the parents of about 50,000 infants who are born premature in the U.S. each year. Premature babies often face a host of medical problems and also are at a higher risk for long-term neurodevelopmental disabilities. In fact, prematurity accounts for about 45 percent of kids with cerebral palsy, 35 percent of kids with vision impairment, and 25 percent of kids with mental or hearing impairment.
Seattle Children’s neonatologist Sandra Juul, MD, PhD, suspects a hormone called erythropoietin (Epo) holds the key to reducing the negative effects that premature birth can have on the brain, and she has launched a national, multi-center trial to test this theory.
In the randomized, placebo-controlled study, called the PENUT (Preterm Epo Neuroprotection) Trial, 940 extremely preterm infants (born between 24-28 weeks gestation) will be enrolled at 18 research centers and 29 hospitals across the nation. The University of Washington is the primary enrolling site in Washington, but eligible patients who are then transferred to Seattle Children’s Hospital will also be involved. The study is funded by the National Institute of Neurological Disorders and Stroke (NINDS).
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Authors: Melanie Harrington
In honor of World Down Syndrome Day, Melanie Harrington shares excerpts from her blog, Our Journey Through Life – a rich chronicle of a baby’s fighting spirit and a mother’s courage to walk “the road less traveled” and arrive a better person.
May 2012: Our world changes forever
We get the call we’ve been dreading: the baby boy I’ve been carrying for 15 weeks has Down syndrome. What?! How can this be? I’ve done everything right. I don’t drink, smoke, take medicine or eat foods I’m not supposed to eat. Why me? Why us? I am mad, sad, anxious and confused. Will we be able to love this baby? What does his future hold? Bullying, dependence, frustration? And, what does my 2-year-old son Cody’s future hold? Constant defending? Jealousy?
I’m feeling very un-mommy-like thoughts that I never thought I could feel about my unborn baby. Can I handle this? Can my husband, Chuck? Will our marriage survive? Right now, I don’t know the answer to these questions.
My doctor refers us to a genetic counselor for more testing. I don’t really gel with the first counselor, so she refers me to Seattle Children’s Genetic Counseling Clinic. This counselor immediately puts me at ease and I like her honesty. I also see Dr. Margaret Adam, who is wonderful and gives me lots of helpful information. Dr. Adam reassures me that Down syndrome can affect any family – one out of every 800 babies born in the U.S. has the condition.
June 2012: Grief…then acceptance
I still feel out of control – so desperate to understand what is really happening. I go to sleep and wake up not remembering if the diagnosis is a dream or real, then I remember. We cry a lot and worry all the time. We grieve for the child we thought we were having and we don’t know if we can ever come to terms with the child we are having.
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Authors: Rachel Hart
In the sleep clinic, co-investigators Melinda Garberich, left, and Jennifer Patano are looking at how iron supplements affect quality of life.
Katie Davenport and the other nurses on the surgical unit at Seattle Children’s Hospital generally use oral or underarm thermometers to take patients’ temperatures. But in other areas of the hospital, clinicians use temporal thermometers, which take readings with a simple forehead swipe.
Parents who have seen the temporal thermometers in action often ask Katie and her colleagues why they can’t use this tool on the unit, since it can take a temperature without even waking a child.
The question got Davenport and her colleagues thinking.
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Authors: Alyse Bernal
Victoria Millard, left, and Linda Severt, right, captivate patient Karsten Hendricks, 2, with music and bubbles (courtesy of John Curry Photography)
If you happen to stroll through Seattle Children’s Hospital’s medical or surgical unit on a Tuesday, you’ll notice something’s a little different – the air feels a little lighter. You’ll likely hear sounds of music and laughter flowing through the halls, and you may even encounter a juggling act.
The spirits of patients, families and staff are a little brighter on this day because of a couple of clowns. No really – a few actual clowns that are a part of the Room Circus Medical Clowning group.
Hanging out with the clown posse
I was recently lucky enough to get a chance to tag along with a few of the clowns during their visit at the hospital. In spending the day with Victoria Millard (aka Dr. LaFoo), who is executive artistic director of the group, and Linda Severt (aka Dr. Hamsterfuzz), who is the program manager, I witnessed firsthand the joy they brought to everyone they encountered – patients, parents and staff alike.
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Authors: Kathryn Mueller
In honor of American Heart Month, we are sharing Gabrielle’s incredible journey from sick baby to healthy toddler.
Christen Simon was 18 weeks into her third pregnancy when a routine ultrasound revealed the unthinkable: a serious birth defect. The daughter that Christen and her husband would call Gabrielle would need a heart transplant soon after birth.
“At that point I was in shock,” said Simon. “I didn’t know heart defects existed before that point in time. It wasn’t even in my scope of possibilities, not for my daughter.” Read full post »
Authors: Kathryn Mueller
In honor of American Heart Month, we are sharing a series of stories about some of our incredible heart patients who have overcome the odds.
Nobi Johnson was a seemingly healthy, charismatic and extremely athletic 13-year-old girl. She excelled at sports and was a star on the basketball court and soccer field. There was nothing she couldn’t do if she put her mind to it, which made the diagnosis of an anomalous coronary artery difficult to understand. Sports were out of the question, due to the unforeseen heart defect. How would Nobi find her happiness again? It would take over a year, but Nobi would find herself back on the court, thanks to her determination to play again and Seattle Children’s and Mary Bridge Children’s Regional Cardiac Surgery Program. Read full post »
Authors: Rose Ibarra (Egge)
Last fall, 20-year-old Milton Wright III was given a death sentence. Today, he is expected to live a long, healthy life. This is the incredible story of how two determined researchers and the parents of a young boy came together to save him.
On Sept. 18, 2013, 20-year-old Milton Wright III walked into Seattle Children’s Hospital and received some devastating news.
Leukemia. Again. The third time in his young life, to be precise.
Wright wasn’t surprised by the diagnosis. He had been worried his cancer was back and went to the hospital alone to avoid worrying his mom and three younger siblings. Still, the news was paralyzing.
“I really felt like I was coming up in the world,” he said. “I thought I was done with cancer.”
Then the news got worse. Wright’s leukemia had become resistant to chemotherapy. A bone marrow transplant could cure his cancer, but he would have to be in remission first, and that couldn’t happen without chemotherapy. His chances of survival were dismal. Read full post »
Authors: Alyse Bernal
Nicky, right, before he went to his prom this year.
Over the past two years, 17-year-old Nicky Richens’ life has transformed. He has found independence and a sense of freedom that he has never before known thanks to a small, discrete device called a phrenic nerve stimulator.
Nicky was born with congenital central hypoventilation syndrome (CCHS), a rare disorder that affects the autonomic nervous system and causes kids to essentially forget to breathe. Those that have this condition require 24-hour ventilatory support. The phrenic nerve stimulator, or pacer, can be concealed underneath clothes, provides up to 16 hours/day of breathing support and allows patients to be fully mobile.
“Pacers enable kids to get the health benefits of constant, proper oxygenation and ventilation without looking different or being restricted by it, which is huge in the life of a child,” said Maida Chen, MD, director of Seattle Children’s Hospital’s Pediatric Sleep Disorders Center. “With pacers, kids go on to have very meaningful lives because they are healthier, they feel better and they are free to participate in their life.”
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Authors: Rachel Hart
Like many of his patients, Tim Brei, MD, lives with spina bifida, a birth defect of the spinal cord. He understands the challenges facing his patients and their families because he faces them, too.
After 24 years at the Indiana University School of Medicine, Brei moved west in August 2013 to join the Developmental Pediatrics team at Seattle Children’s Hospital.
“His very presence sends a message to our families,” said Bill Walker, MD, chief of Developmental Pediatrics at Seattle Children’s. “It tells them that a disability does not necessarily have to define or limit you.”
As medical director of the Spina Bifida Association of America, “Dr. Brei is directly connected to the research and resources families need,” added Walker.
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Authors: Rose Ibarra (Egge)
In 2014, the Seattle Children’s Research Institute will implement life-saving projects, begin new studies to keep children safe and continue searching for ways to prevent and cure diseases that threaten some of our youngest patients. We are celebrating the New Year by highlighting some of the work that has researchers excited about 2014.
Looking forward to saving lives
Evelyn Tomlin was born April 16, 2013. Doctors in Oregon did not know that she had SCID until she was 3 months old.
On Jan. 1, years of work by Children’s research and clinical staff came to fruition when a test for severe combined immunodeficiency (SCID) was added to Washington’s newborn screening panel for all babies born in our state. Known as the “bubble boy” disease, SCID is a group of inherited disorders that cause severe abnormalities of the immune system. Babies with this disease often show no symptoms at birth, but after a few months they are unable to fight infections. Common illnesses, such as the flu or an ear infection, can be life-threatening for a child with SCID.
“Babies with SCID benefit from their mom’s immune system at birth, but once that goes away they have very little ability to defend themselves,” said Troy Torgerson, MD, director of Children’s Immunology Diagnostic Lab.
If caught early, more than 90 percent of SCID cases can be cured with a bone marrow transplant or gene therapy. But once a baby contracts an infection, survival rates drop to 50 to 60 percent.
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