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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Courtesy of Paul Joseph Brown/GAPPS
Globally, 15 million babies are born preterm each year, and more than 1 million of those do not survive their first month of life. Here in Washington, more than one in every 10 babies will be born preterm – before 37 weeks gestation – increasing the chance of birth complications, developmental disabilities, and lifelong health issues like cerebral palsy, asthma, and vision and hearing problems.
Today the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), an initiative of Seattle Children’s, has announced that it’s granting a total of $2.8 million to two international pregnancy research sites as part of its Preventing Preterm Birth initiative (PPB). The international sites, located in Zambia and Bangladesh, will mirror similar sites GAPPS has developed in the U.S., and will enroll women early in pregnancy and collect information and biological specimens during their pregnancies and deliveries.
The data and specimens collected for the research will be used to identify the causes of preterm birth as well as novel strategies for prevention. For more information, please refer to the press release.
Chrissy Ehlinger had a very normal pregnancy, so when her son Carter was born she had no concerns about his health. He was beautiful and perfect and looked like any healthy baby should. It wasn’t until a simple, inexpensive and non-invasive newborn screening test called pulse oximetry screening revealed the unthinkable.
Pulse oximetry testing is not required in every state, even though it is recommended by the United States Department of Health and Human Services, the American Heart Association, the American College of Cardiology, and the American Academy of Pediatrics.
Fortunately for Chrissy, the hospital where baby Carter was born elected to do pulse oximetry testing on newborns. Here, Chrissy recounts how that decision saved her little boy’s life. Read full post »
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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Years ago I was listening to a radiothon for Seattle Children’s Hospital while driving in my car. I was so moved by the patients’ stories of hope and healing, I had to pull into a parking lot because I was crying so hard. I called the number and made a donation – never dreaming that I would have more than a “goodwill” relationship with the hospital.
Fast forward to 2012.
I heard that same radiothon in the car. My eyes swelled with tears and my throat tightened, this time because my newborn son was one of those patients in a bed at Children’s.
My name is Breanna Borgen. They say life can turn on a dime and that was certainly true for my husband, Erik, and me.
Early in our first pregnancy all seemed to be going well when I very unexpectedly went into labor at 25 weeks. Though my doctors did everything they could to stop my delivery, our son Benson was born almost four months early on Sept. 11, 2011, at the University of Washington Medical Center (UWMC). He weighed a pound and a half, measured 11 inches long and immediately received a breathing tube because he couldn’t breathe on his own.
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In honor of World Prematurity Day this Sunday, Nov. 17, Jennifer Sinconis shares her twin boys’ incredible struggle and journey after being born at just 24 weeks, each weighing only about a pound.
I remember finding out I was pregnant. My husband and I had just started trying, and we couldn’t have been happier. I also remember the shock when I found out I was carrying twins – identical twin boys. My pregnancy was pretty easy and uneventful. I was young and healthy, so we really didn’t have any major concerns. Looking back, that shows exactly how naïve I was of the potential complications that can come during a pregnancy.
The day that I hit 24 weeks I ended up being rushed to the ER. My placenta had detached, I was hemorrhaging and my boys were on their way. The doctors tried unsuccessfully to stop the labor. I remember asking my OB-GYN what this meant. What would happen if my children were born this early? His response was simply, “It’s not good.”
Born 16 weeks premature, Aidan weighed 1 pound, 14 ounces and Ethan weighed 1 pound, 6 ounces. Neither one was breathing when they were born. The doctors were able to resuscitate Aidan fairly quickly, but Ethan took about five minutes. His throat was so tiny that they had a hard time getting the ventilator tube in.
My world shattered. I was not able to move after my emergency C-section, and it was over 24 hours before I was allowed to see my boys. I remember the panic in my mom’s face that evening – she was sure that I would miss the opportunity to see them alive.
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In December 2012, Seattle Children’s became the first (and for now, the only) place in the nation that offers physical therapists an accredited fellowship in neonatology. For seasoned pediatric physical therapists who want to work with the tiniest, most fragile babies, the fellowship offers a unique opportunity for training.
In December, the American Board of Physical Therapy Residency and Fellowship Education (the credentialing arm of the American Physical Therapy Association, or APTA) accredited the neonatology fellowship, which is a partnership between Children’s and Rocky Mountain University of the Health Professions (RMUoHP) in Provo, Utah.
The fellowship, which focuses on babies from birth to 12 months of age, combines six academic credits at RMUoHP with 1,000 hours of mentored clinical training at Children’s. Read full post »
The Washington State Department of Health has designated the neonatal intensive care unit (NICU) at Seattle Children’s Hospital as a Level IV regional NICU, which is the highest level of care available for critically ill newborns. Seattle Children’s is the first hospital in Washington state to receive this designation.
The new designation of Seattle Children’s NICU follows the recent revision of the state’s Perinatal and Neonatal Level of Care Guidelines by the Department of Health in February 2013. The revision is in line with the updated American Academy of Pediatrics (AAP) standards for NICUs that were outlined in September 2012.
The guidelines define four levels of care: normal newborn nursery (level I), special care nursery for premature and mildly ill newborns (level II), neonatal intensive care for very premature and critically ill newborns that sometimes offer select surgical procedures (level III), and regional NICU with comprehensive services to treat all medical and surgical problems of newborns (level IV). Read full post »