Christian at soccer practice before his birthday.
Christian Roberts was as excited for his 12th birthday as any child would be. But this April marked a very special occasion. It was the first time he could express that excitement with a smile.
Twelve years ago, Christian was born deaf and with bilateral facial paralysis due to a rare genetic anomaly called CHARGE Syndrome. For his entire life, the happy, playful Dallas boy who loved video games and LEGO bricks couldn’t move his facial muscles to smile. Christian wanted nothing more than to better communicate with his family, and with others who don’t know sign language.
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“Stop talking and start doing.”
The 10-year-old Virginia girl who spoke these words to lawmakers helped increase funding for pediatric research this year with the passing of a new law, and Seattle Children’s Research Institute is celebrating the news.
“Pediatrics gets a very small share of the National Institutes of Health budget, certainly not proportional to the number of children in the United States,” says Jim Hendricks, PhD, president of Seattle Children’s Research Institute. “Any dollars that make their way to pediatric research may help our patients and other children around the world.”
A little girl makes a difference
Fifth grader Gabriella Miller became a widely celebrated childhood cancer activist during her 11 month battle with brain cancer. In the weeks before her death on Oct. 26, she urged lawmakers to increase support of pediatric research.
“We need action,” she said during an interview for a cancer awareness documentary. Read full post »
The idea of positive parenting may sound simple, but throughout the month of April, in recognition of Child Abuse Prevention Month, it holds a special significance. As the popular saying goes, it takes a village to raise a child, and Seattle Children’s Hospital believes that in banding together as a community, the prevalence of child abuse can be decreased.
According to the American Academy of Pediatrics (AAP), parental feelings of isolation, stress and frustration are major causes of child abuse and mistreatment in the U.S., which is why Seattle Children’s is asking parents, caregivers and community members to take a moment to make a positive parenting pledge. Whether it’s being patient with a crying child or embracing the turbulence of parenting, the pledges represent a promise, not just for parents, but also for members of the community. By encouraging parents and empathizing with their daily struggles, a community can be built with a foundation rooted in parental support, instead of judgement.
And this April, Seattle Children’s is focusing on an extraordinary group of caregivers that don’t get as much recognition: fathers.
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Recently, a report by the Brookings Institute came out about the dismal labor market for teens (and, for that matter, young adults). Particularly for high-school age teens, job opportunities are few and far between. In fact, employment rates dropped almost 50 percent for 16-19 year olds between 2000 and 2011.
Of course, we know the job market itself was shaken up by the recent recession. Also, the report points out that a small portion of the drop in employment is due to a rise in school enrollment, which is good news!
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Vaccines have been a topic of much debate lately: Do they help? Are they safe? Should I vaccinate my child?
I can recall a recent visit with a 16-year-old girl. She had a question about the HPV vaccine. She’d seen a commercial and was interested in learning more. We discussed the risks and benefits as well as the purpose of the vaccine. After she’d asked a series of very insightful and thought out questions, she decided she wanted to proceed with starting the vaccination series (the Gardasil vaccine is a series of 3 shots over 6 months). We brought her mother in to talk about starting the series and her mother hesitated. Like any caring parent, she wanted to be certain her daughter was safe. Their pediatrician hadn’t discussed the vaccine and she’d read on social media that it had potential side effects. At the end of our visit, my patient still wanted the vaccine, but her mother wanted to think about it.
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Julie Kobayashi, a 12-year-old girl from Hawaii, is Seattle Children’s third patient to receive the HeartMate II ventricular assist device (VAD), a device that allowed Julie to leave the hospital while waiting for a life-saving heart transplant. This is her story, from failing heart to transplant.
Julie Kobayashi started feeling sick on a Saturday in November 2013. She felt nauseous, but didn’t have a fever. The symptoms reflected that of the stomach flu. Her family wasn’t overly concerned at first. They thought the symptoms would subside and their daughter would be back to her normal self in no time. For Julie, an active and fun-loving 12-year-old, she usually didn’t let anything slow her down for too long.
When Monday rolled around, Julie felt well enough to go to school. She enjoyed school and had been working really hard practicing her clarinet for an upcoming concert. Missing school wasn’t an option in Julie’s mind. Read full post »
Meet Olivia Rickert and Michile Smith: Two generations apart, but linked forever by their special hands.
When Olivia Rickert was still in utero, an ultrasound at 20 weeks revealed that she had inherited a genetic mutation passed down from her mother and maternal grandmother. In Olivia’s case, the mutation was expressed as a cleft (split) hand. Though most kids born with this condition have no other health problems and can overcome their hand difference naturally or with surgery, Olivia’s mom (Stephanie Rickert) worried it might signal worse news. Stephanie had little outward sign of the mutation, but her mother, Michile Gormley Smith, was born with split hand/split foot absent long bone syndrome — claw-like hands and feet and legs missing tibia bones. (Smith was treated at Seattle Children’s starting in 1958 by pioneering orthopedist Dr. Ernest Burgess.)
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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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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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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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