Camryn was born with a number of health conditions, including torticollis — a painful condition in which the neck muscle is shortened, causing the neck to twist — a heart murmur, and polydactyly (two extra fingers and one extra toe).
Shortly after birth, Camryn began physical therapy for the torticollis at CHOP’s Specialty Care Center in Mays Landing. After about a year of PT, her condition had improved significantly. But over that time, her physical therapist grew concerned about Camryn’s extreme behavioral issues, which included banging her head, biting and screaming. Her tantrums would last more than an hour when she was at home. Also concerning was the fact that at nearly 2 years of age, Camryn only said a few words, mostly just mama and dada.
The family was referred to CHOP developmental pediatrician David Burgess, MD, who recommended genetic testing. The tests found Camryn had 22q11.2 deletion syndrome, a genetic disorder that can result in heart defects, poor immune system function, cleft palate, complications related to low levels of calcium in the blood, and delayed development with behavioral and emotional problems.
Camryn began intensive speech therapy twice a week at Mays Landing with Christine Sullivan, MS, CCC-SLP, and also received early intervention for speech. Christine gave the family tasks to work on at home that mirrored the techniques and strategies she used in her speech sessions.
As a result of this full team effort, Camryn learned to talk in a matter of months and quickly graduated from needing speech therapy. She is now 3 years old and keeping up with the other kids in preschool.
“She’s developmentally appropriate for her age and her preschool teachers say she’s doing wonderfully,” says her mom, Holly, adding that CHOP has been very accommodating to the family’s New Jersey location. “They try to get doctors closer to us, at Mays Landing or Voorhees, so we don’t always have to travel to the Center [for Childhood Communication] in Philadelphia.”
Camryn recently began struggling with an aversion to food, so a nutritionist is working with her to determine why she doesn’t like certain textured foods. And she is in speech therapy again to work on articulation. But despite these challenges, Camryn has made wonderful gains in both her communication skills and her behavior.
“She had a lot of anxiety that stemmed from her language issues,” says Holly. “Her needs and wants were hard for her to get across, which was very hard for her to handle and would cause her to melt down. That anxiety is all gone. Now she’s just a well-balanced little girl.”
