Baby Genesis before her surgeries
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.
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Shortly after Julie Wyatt delivered baby Nolan Wyatt on December 15, 2013 in Olympia, she received some startling news. Nolan was diagnosed with a congenital diaphragmatic hernia (CDH) – a hole in his diaphragm – a potentially life-threatening condition. It was something they didn’t see coming. Typically, CDH can be diagnosed before birth using an ultrasound, but Nolan was a rare exception. Read full post »
On Sunday, Briella Caniparoli celebrated her first birthday, a miraculous feat given the struggles she’s had to overcome. This is Briella’s story, from a devastating heart diagnosis before birth to hope for a bright future.
Briella with Dr. Agustin Rubio at Seattle Children’s Hospital
Christina Caniparoli and her husband, Mark, came to Christina’s 20-week ultrasound at a local hospital with no expectations except to learn the sex of their second child. Four hours later, the couple left with very different news.
“During the appointment they kept leaving the room and coming back, then leaving again,” Christina Caniparoli said. “Something was definitely not right.”
Doctors told the Caniparolis that their baby had significant heart defects, and most likely had Down’s syndrome. The parents-to-be were presented with the option to terminate the pregnancy.
“It just wasn’t an option for us,” Christina Caniparoli said. “I wasn’t ready to just accept what they were saying, but even if they were right, we would deal with whatever it was.”
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Shannon Keating, 16, before cancer diagnosis.
Shannon Keating always imagined that she would be a mom some day, but she didn’t expect she’d be treated at a fertility clinic at age 17. Shannon was diagnosed with Hodgkin Lymphoma as a high school sophomore, was successfully treated and then relapsed nine months later. As she prepared to fight for her life a second time, experts at Seattle Children’s Hospital helped her preserve her dream of being a parent one day.
A devastating diagnosis
Shannon was first diagnosed with Hodgkin Lymphoma in March 2013, after she discovered a lump on her neck. The treatment was six months of less-aggressive chemotherapy that oncologists did not believe would affect her fertility.
“I was relived that this therapy was less toxic, but when it was finished I didn’t feel like I was done,” Shannon said. “I had this feeling hanging over my head. I believed my cancer would come back.”
Unfortunately, Shannon was right. That December, her cancer relapsed. Facing a life-threatening illness once again, she learned her second round of treatment would be more aggressive and could cause infertility. Doctors offered her the opportunity to freeze her eggs so that she might later become pregnant using in-vitro fertilization, but Shannon was initially overwhelmed. Read full post »
In honor of Childhood Cancer Awareness Month, 26-year-old Heather Wick talks about having cancer at the age of 18 and how the experience influenced who she is today.
Heather Wick with her son, Daniel
Until beginning to write this post, I had never really thought about how generic introductions are. Name, age, job title, where you live, whose wife or mom you are…how much do you share to tell a person who you are? My introduction is fairly typical, Heather Wick, 26 years old, nanny, lives in Monroe, Alan’s wife and Danny’s mom…oh and CANCER SURVIVOR.
At this point in exchanging pleasantries I often get, “Oh my gosh… you had cancer?! You’re so young!” and then I begin to walk my curious new friend through my journey. Why don’t I just leave out the cancer survivor bit and make things quick and simple you ask? Well because I am proud to be a cancer survivor. That title is as much a part of me as my name is. So, new friends, I invite you to walk through a shortened and condensed version of my journey here, on the blog for the hospital that saved my life.
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Brenda Senger and her daughter Tessa.
Tessa Senger, of Spokane, Wash., appeared to be a perfectly healthy child until she began having seizures at age 4. Her mother, Brenda Senger, took Tessa to a local neurologist, who diagnosed her with epilepsy. But the treatments prescribed to Tessa did not lessen her seizures, which were occurring up to 50 times each day. Tessa grew weaker and began losing weight.
“I felt helpless,” her mom said. “I just wanted her seizures to stop and for her to start growing again.”
Eventually, Tessa was referred to Seattle Children’s Hospital, where Dr. Russell Saneto, director of the Mitochondrial Medicine and Metabolism Care Team at Seattle Children’s and an investigator at Seattle Children’s Research Institute’s Center for Developmental Therapeutics, diagnosed her with a mitochondrial disease. Saneto prescribed a vitamin cocktail and seizure medications that changed Tessa’s life. The tiny girl, who weighed just 35 pounds until age 6, finally started gaining weight and her seizures stopped almost completely. Tessa is now 15 years old and has only had two seizures since second grade. She is healthy enough to begin reducing her seizure medications.
“Tessa is just thriving year after year,” Senger said. “I am thankful every day that we found Dr. Saneto and the support of Seattle Children’s Hospital.”
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At least 138,000 children in the United States are estimated to have Tourette’s syndrome, a condition which causes urges that lead to repeated involuntary movements (motor tics) and sounds (phonic tics). For decades, research suggested pharmaceutical therapies were the only effective treatments for tics, but clinical psychologist Dr. Geoffrey Wiegand is having success using a new, innovative behavior intervention to treat tics. Wiegand is also offering highly effective behavior therapy to children with Obsessive Compulsive Disorder (OCD) to help them manage their worries and compulsions.
Jules Brown’s OCD made her afraid to leave her house. Now that she has has effective treatment, she tries new things like inner tubing.
Jules Brown appeared to be a happy, healthy child until she was 5 years old, when her parents began noticing odd behaviors. She was constantly changing her clothes out of fear of being dirty and would wash her hands until they bled. It took the family hours to leave the house because Jules was terrified she would have an “accident” and would insist on visiting the bathroom repeatedly. At school, she spent many days in the nurse’s office, afraid of various illnesses or injuries that she did not have.
“As her mom, I wanted to protect her, so we were constantly doing anything we could to reassure her,” Christie Brown said. “But the impulsive behaviors just got worse.” Read full post »
This is a special guest post from JoNel Aleccia, staff writer at Fred Hutchinson Cancer Research Center. See the original article and photos here.
Rachel Dixon holds her son Ezra, who was born with SCID. Nearly two months after having a life-saving bone marrow transplant from his brother, he’s doing well. Photo courtesy of Bo Jungmayer / Fred Hutch News Service
Ezra Dixon was born April 7, four months after the state of Washington first starting screening newborns for the disorder commonly known as “bubble boy disease,” which leaves its patients at the mercy of common germs.
Some 22,610 babies were tested before him and more than 28,000 have been tested since, all negative, health records show. But Ezra is different.
The bald, blue-eyed boy is the only child in the state so far diagnosed with severe combined immunodeficiency, or SCID, detected through the program.
When staff at the Washington State Department of Health Newborn Screening Lab analyzed the drop of blood pricked from his heel shortly after birth, they found none of the T-cells that protect the body from infection, a certain sign of the rare disorder.
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In my last post about “The Fault in Our Stars,” I made a comment about how most patients live, if not thrive after their cancers. I am deeply grateful for the readers who correctly commented that some patients also die.
There are no words to express how tragic, painful, or unjust, the death of a young person from cancer can be. I particularly appreciated these comments because they came a day after the death of one of my own, and very beloved, patients. I wrote this memoir the day he died. With his parents’ permission, I am sharing a few pieces of his story, his legacy, with you.
Daniel Mar died early this morning at the age of 20. He was one of my first patients as an independent oncologist. For that alone, I could say he will not be forgotten. Daniel was a “patient” simply because he happened to have cancer; terrible cancer that ultimately took his life. But beyond that, he was so much more. He was an advocate. A son. A brother. A devoted friend. To me, he was my muse. My teacher. And, through it all, my friend.
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On a Saturday in March, 13-year-old Trey Lauren was playing with his friends at a birthday party when he fell and cut his knee on a nail. It was a typical injury for a kid his age, but what resulted was anything but typical.
Trey was taken to a local emergency room that night, and by Sunday morning his wound had been closed with six stitches. But when Monday morning came, he was too sick with a fever to go to school, and his knee had begun to swell. Trey’s parents, Mark and Randi Lauren, decided to take him to urgent care, where his stitches were removed and he was started on antibiotics. However, later that night, Trey’s fever persisted, and the swelling in his knee had only gotten worse.
One trip to the emergency room later, Trey received an additional dose of broad spectrum antibiotics, and the decision was made to transfer him to Seattle Children’s Hospital. Read full post »