Patient Care

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A family comes full circle when a genetic mutation passes from grandmother to daughter to granddaughter

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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Hormone may be vital in improving brain development in premature babies

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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A child born with Down syndrome: One mom’s path from grief to gratitude

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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Trailblazing nurses seek solutions to everyday puzzles

In the sleep clinic, co-investigators Melinda Garberich, left, and Jennifer Patano are looking at how iron supplements affect quality of life.

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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Clowning around brings joy to patients and families

Victoria Millard, left, and Linda Severt, right, captivate patient Karsten Hendricks, 2, with music and bubbles (courtesy of John Curry Photography)

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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