After Olivia Bush was diagnosed with single-suture craniosynostosis, her parents did not know how her brain would develop over time. A new study led by Seattle Children’s is addressing these concerns.
Seattle Children’s researchers have published the results of a 10-year, multi-site study tracking the cognitive development of children with single-suture craniosynostosis from infancy to school age. The results could help families and clinicians better predict which children with this condition are at greater risk of having learning deficits so that they might intervene early in the child’s life.
The research is significant for parents like Cindy and Todd Bush. Twelve years ago, Cindy and Todd learned their 3-month-old daughter, Olivia, had craniosynostosis, a condition in which one or more of the special joints in a baby’s skull (sutures) grow together (fuse) earlier than normal. When these joints come together too early, a baby’s skull cannot grow properly. Craniosynostosis occurs in approximately one in 1700-2500 live births. Corrective surgery to restore the suture is preferentially performed in the first year of life. Read full post »
The first thing Dr. Michael Cunningham noticed was the crowding. Hundreds of African mothers and their young children, pressed shoulder to shoulder in a time-worn hospital’s hallway, waiting patiently for hours — if not days — to receive cleft lip and palate care for their child. It was then when he fully understood the importance of his goals in Africa and how much work lay ahead.
In honor of the New Year, we’re taking a look back at some of our most popular and memorable blog posts from 2014. Below is a list of our top 10 posts. Here’s to another great year of health news to come. Happy New Year!
Two doctors at Seattle Children’s went the extra mile to save Tatiana, one of the sickest babies they’ve ever seen. They got FDA approval to use a long-forgotten drug and are now inspired to help make this drug available to save more lives.
AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore. Read full post »
Discovering your child has a craniofacial condition can be a stressful time filled with questions and uncertainties. Seattle Children’s Craniofacial Center aims to not only keep the patient’s needs in mind, but also the needs of the entire family. Below are the stories of two unique craniofacial journeys and how the patients and their families received support throughout the process.
Genesis and family find comfort after early diagnosis
Genesis Murillo is a fun-loving, 4-year-old who was born with bilateral cleft lip and palate – a birth defect that occurs when parts of the lip and roof of the mouth don’t fuse together during pregnancy. Cleft lip and palate affects one in 700 infants worldwide, and is one of the most common birth defects. It can be caused by several factors, including genetic abnormalities, but there is no single cause.
The sun was bright when Lyla Conrad and her father arrived early for softball practice to catch a few pop flies. Lyla, 9 at the time, had caught hundreds before, but that day she lost one in the sun. It fell straight down into her eye. Almost immediately, her eye was swollen and she felt incredibly nauseous.
“We thought she had a concussion,” said Sari-Kim Conrad, Lyla’s mother. “We never thought a softball could do so much damage.”
After receiving an initial check-up at a local emergency room, she was transported by ambulance to another area hospital for further tests. The diagnosis: an orbital “trapdoor” fracture. Lyla would need surgery, and soon. Read full post »
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.
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.
Jessica Schend, now 17, was born with a cleft lip and palate. She has been treated at the Seattle Children’s Craniofacial Center her entire life.
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.
Cleft lip is one of the most common facial malformations in the world, affecting one in 700 children. Still, few researchers focus on this condition. But craniofacial scientist Timothy Cox, PhD, is leading efforts at Seattle Children’s Research Institute to determine how cleft lip might be prevented in the future. Read full post »
At age 4, Natalie Merlo was diagnosed with a facial condition that left her feeling self-conscious and very different from other people. While growing up, she even avoided having her photo taken. Through the work with her care team at Seattle Children’s Craniofacial Center, Natalie has gained confidence, has happily accepted who she is and has a powerful message for others – “it’s OK to be different.”
Natalie, now 18 years old, recently entered college with a new facial structure and a new outlook on life after completing two major surgeries. For most of her life, Natalie lived with a severe under bite and deep, wide-set eyes and cheek bones, as a result of a genetic condition called Crouzon Syndrome. While her features were typically brushed off by strangers, it still affected the way she thought about herself.
“These differences were things other people glazed over, and didn’t really notice at first glance,” said Natalie. “But to me, they were so unfortunately obvious. I wish I could say that I didn’t let these things phase me, but that was far from the truth.”
While many people believe social workers only step in when problems arise, they are often there from the beginning and can be a family’s biggest ally, problem solver and an invaluable resource.
At Seattle Children’s Hospital, social workers are critical to the integrated teams. As families meet with pediatricians, nurses, speech therapists and surgeons, social workers keep in touch with all team members to ensure that each patient is provided with the resources and support they need.
As a social worker in our Craniofacial Center for the past six years, I really enjoy working with our patients and families. I have worked with hundreds of families to help them navigate a difficult diagnosis, sift through medical jargon or just provide a helping hand.
In my experience, here are five things that you should know about the important role that social workers play in a pediatric hospital like Seattle Children’s.
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.