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.
Apert syndrome is a rare condition that occurs in one of 45,000 to 160,000 live births. For the children it affects, it’s very complex and is not only challenging to live with, but it’s also very difficult to treat.
Seattle Children’s is considered a trusted resource for families needing special care. For the Wall family of Ephrata, Wash., their trust in Children’s, including the Craniofacial Center and Orthopedics and Sports Medicine teams, enabled them to become the family they are today. Mindy and Darryl Wall have six children – three biological and three adopted – four of whom have special needs. Here’s their story…
In 1993, the Wall’s second son, Mitchell, was born with a clubfoot and was later diagnosed with Asperger’s Syndrome. At birth he began receiving care at Children’s. Not only was he diagnosed with Asperger’s at Children’s, but he had two different clubfoot surgeries by the Orthopedics and Sports Medicine team, as well as his bracing and casting at the hospital. All of this seeded a long and trusted relationship between the hospital and the Walls. The care Mitchell received helped Mindy and Darryl become more comfortable raising children with special needs, and inspired them to adopt children who needed medical assistance, because they knew the hospital was there to help.
“We got to trust and know our way around Seattle Children’s,” said Mindy Wall. “With this knowledge and resource, we knew we could provide a loving home to other children with special needs.”
Seven-year-old Mavrick Gabriel of Kenai, Alaska could be described as being “beyond his years.” He’s compassionate in a way that you don’t often see with young children, and he wants to educate others about his birth defect, craniofacial microsomia, and to help kids in the process.
Mavrick was born without a left ear and with a very small jaw that did not have a joint on one side. He can’t eat solid foods, has to use a feeding tube and his speech is affected. In June 2012, Gabriel and his family invited television cameras to capture a surgery—one of dozens he’s endured—that helped move him closer to having a jaw. But he doesn’t want you to feel sorry for him. “Most kids never have to go through this and I’d like to help other people with what I’m going through,” Mavrick said.
Research in South America on a rare ear defect could help pinpoint risk factors for some of the most common birth defects in the United States.
Some 120,000 babies in the United States are born each year with birth defects, according to the March of Dimes. The most common birth defects are heart defects, cleft lip and cleft palate, Down syndrome and spina bifida.
Eric Turner, MD, PhD, of the Center for Integrative Brain Research at Seattle Children’s Research Institute has his sister and her pet rat to thank for his most recently-published study which identified a new kind of gene mutation which causes ear malformations in rats and mice. Findings from the study are expected to help researchers identify the gene mutations which cause these types of malformations in humans.
More developmental monitoring of children with skull deformation needed, researchers say
Top of head of child with deformational plagiocephaly (drawn by Huang MHS)
As many as 30 percent of all infants may have deformational plagiocephaly, also known as positional plagiocephaly, which is characterized by asymmetry and flattening of the head caused by external pressures. In previous studies, infants and toddlers with this condition have been shown to experience delays in development compared to unaffected children.
Researchers at Seattle Children’s Research Institute wanted to find out if these developmental delays persisted as children grew older. The researchers studied the development of 224 children with deformational plagiocephaly from infancy ( months, on average) through 36 months of age, comparing them to 231 unaffected children. This is the first scientifically rigorous study to examine development in preschool-age children with deformational plagiocephaly compared to a control group of kids without the condition.
Results of the study were published today in the journal Pediatrics. The findings indicate that children with deformational plagiocephaly continued to score lower on development measures than unaffected children at age 36 months. Differences between children with and without deformational plagiocephaly were largest on measures of language and cognition, and smallest on measures of motor skills such as balance, jumping and running. Read full post »
In October 2010, Heather Landis received a phone call no expectant mother ever wants to receive. At five months pregnant with their second child, the doctor told Heather and her husband Dale that the baby girl they were expecting would be born with a cleft lip and palate, birth defects that occur early in pregnancy. After the initial shock of the diagnosis, the Landis’s began preparing themselves for the difficult road that awaited them. Struggling with her emotions, Heather put what she was feeling into a candid and personal blog detailing the months before and after the birth of her daughter, Danielle.
Her blog detailed Danielle’s trips to Seattle Children’s Hospital, where Dr. Hitesh Kapadia initiated the repair process using a nasoalveolar molding (NAM) device – a non-surgical method of reshaping the gums, lips, and nostrils of children with large cleft lips and palates prior to surgery. Following months with the NAM, the craniofacial team lead by Dr. Raymond Tse performed multiple surgeries to correct Danielle’s cleft lip and palate. Danielle is currently doing very well and her cleft lip and palate were successfully repaired by Danielle’s care team. The team’s courageous efforts, collaborative spirit, and amazing success also inspired Dale to apply for a job at Seattle Children’s, where he works today.
The Landis’ story is told in a compelling photo slideshow narrated by Heather, using entries from her months of blog posts and photos taken by the family during their difficult – but ultimately successful – journey.
If you’d like to arrange an interview with Heather or Dale Landis, or a member of Danielle’s care team, please contact Children’s PR team at 206-987-4500 or at email@example.com.
Seattle Children's complies with applicable federal and other civil rights laws and does not discriminate, exclude people or treat them differently based on race, color, religion (creed), sex, gender identity or expression, sexual orientation, national origin (ancestry), age, disability, or any other status protected by applicable federal, state or local law. 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.