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.”
First adoption: Nick from Russia
In 2001, the Walls adopted 5-year-old Nick from a Russian orphanage. The Walls were aware that he had orthopedic issues; he lacked a right hand, was missing three fingers on his left and had one foot that was two and a half sizes larger than the other. Only after bringing him home did they learn he also had oromandibular limb hypogenesis syndrome, a very rare jaw and limb defect.
Nick, who is now 15, was seen by different specialists at Children’s for his conditions, including those from the Craniofacial Center and Orthopedics and Sports Medicine department, and continues to be closely followed and monitored. The Craniofacial Center team coordinates his care with a local orthodontist in Moses Lake, Wash. who has extracted some of Nick’s teeth, applied braces and spread Nick’s palate to prepare him for surgery. Now that he is almost fully grown, he is slated for surgery by the Craniofacial Center to correct his jawline.
Despite his physical challenges, Nick is an outstanding athlete. He wrestles and plays baseball, but his main sport is soccer. Nick plays on his high school team as well as a premier soccer team and is attending college prospect camps this summer. He also plays the piano and is excelling at school, working on both his high school diploma and a community college associate degree at the same time.
Second adoption: Alaina from China
After three boys, the Walls in 2007 adopted a 2-year-old girl named Alaina from China. Alaina had bilateral craniofacial microsomia, a congenital disorder that affects the development of the lower half of the face (on one side or both), most commonly the ears, mouth and jaw. If severe and left untreated, the condition can lead to difficulties in breathing, speaking and eating.
“We knew Alaina was born without ears, but we weren’t sure what that meant other than she was hearing impaired,” said Mindy. “We called the Craniofacial Center before we brought her home and got them involved right away. That was a good thing because the facial nerve on Alaina’s right side was pinched, which permanently paralyzed the right side of her face and palate, and she had other serious issues.’’
Alaina was having trouble sleeping due to obstruction issues. Otolaryngologist Dr. Kathleen Sie discovered that Alaina had an extra partial tongue in the back of her throat, which she removed, along with her tonsils and adenoids. Left untreated, this would have eventually resulted in death during sleep.
Although her craniofacial condition is serious, Alaina, too, is thriving. Now nine years old, she plays piano, takes ballet and loves to read. Due to the paralysis she was not a candidate for ear reconstruction, but her bone-anchored hearing aid (BAHA) allows her to hear and communicate. In fact, Alaina recently sang a solo in her school concert.
Third adoption: Maia from China
Last October, the Walls brought home 9-year-old Maia, also from China. Maia has a similar medical condition as Alaina, bilateral craniofacial microsomia. She does not have the partial paralysis that Alaina has, but she does have other medical issues: she is missing a part of her lower jaw bone, or mandible, and has a small ramus – the flatter, straighter part on the sides of the lower jaw.
“Like her sister Alaina, Maia has a very complex disorder,” said Dr. Michael Cunningham, medical director of Children’s Craniofacial Center. ”However, she is now at the right place for her care. With our interdisciplinary team and long-term treatment plan, we will help ensure that she has the best possible outcome.”
As they did with Alaina, the Walls made an appointment at the Craniofacial Center before returning from China. Mindy Wall credits Dr. Cunningham, Dr. Sie, and the Craniofacial Center’s interdisciplinary team care for making their hospital and clinic visits as easy and comfortable as possible. She is a candidate for BAHA, which the family and her doctors will discuss during her next appointment in June.
Living lives that may not have otherwise been possible
Thanks to their parents and Children’s, the Wall kids are living lives that wouldn’t otherwise have been possible: Mitchell is about to graduate with a 4.0 grade-point average and an associate degree from Wenatchee Valley College. He plans to transfer to Seattle Pacific University in the fall to pursue a triple major in computer science, computer engineering and electrical engineering.
Without this medical care, Nick surely wouldn’t be an elite soccer player, and Alaina and Maia never would have been able to hear, much less be where they are academically.
“I can’t even fathom what might have been for these amazing kids,” Mindy said. “Regrets? Not even for a second.”
To arrange an interview with the Walls or a member of their care team, please contact Children’s PR team at 206-987-4500 or at [email protected].
