Avery Grantham: A Headband and a Smile
Avery Grantham is a typical toddler – quick to giggle and always with a smile to share. Avery’s mom, Sheila, finds it almost surprising how “happy-go-lucky” Avery is, especially considering all that she has been through.
It wasn’t a typical beginning. When Sheila was 27 weeks pregnant, a prenatal checkup revealed that Avery had supraventricular tachycardia (SVT), a disorder which causes the heart to beat faster than normal. Sheila was monitored regularly, put on medication and even hospitalized three times to help keep Avery’s heart rate stable.
When Avery was born, she was rushed to the neonatal intensive care unit (NICU). Much to the relief of Sheila and her husband, Jason, there was no sign of the SVT. Sheila noticed, however, that Avery’s right eye seemed to bulge out a little. “I mentioned it to several people,” she says, “and they all dismissed it as ‘birth trauma,’ telling me that it would resolve over time.”
But Sheila knew that something wasn’t right, and she kept asking questions. When Avery was 2 weeks old, an MRI revealed a tumor behind her right eye and three brain tumors.
That’s when the Granthams made appointments with Dr. Steven Cohen, Chief of Craniofacial Surgical Services for Rady Children’s Center for Craniofacial Disorders; Dr. Hal Meltzer, Chief of Pediatric Neurosurgery at Rady Children’s; and Dr. Don Kikkawa, Division Chief of Ophthalmic Plastic and Reconstructive Surgery at UC San Diego.
“Dr. Cohen instantly diagnosed Avery with right coronal craniosynostosis,” says Sheila.
Craniosynostosis is the premature fusion of the bones of the skull, which restricts proper brain growth. If left untreated, there’s potential for a variety of physical and developmental problems.
“When I met Avery and saw her scans, it was obvious that she had abnormalities of her skull,” says Dr. Cohen. “She initially came to us because of the tumor, but, because we see patients like Avery on a daily basis, we were able to recognize and diagnose her condition fairly quickly.”
For the Granthams, it was a relief to have a name for Avery’s condition. But it also meant major surgery for their baby girl. When Avery was just 6 months old, she underwent cranial vault remodeling, a procedure that involved reconstructing Avery’s skull to correct the deformity using absorbable weights and screws. She spent five days in the hospital and has a zigzag scar from ear-to-ear.
Avery was also diagnosed with scoliosis, had a reoccurrence of and hospitalization for the SVT, and had physical therapy for torticollis, a condition which causes a stiff neck. Fortunately, the three brain tumors that were originally diagnosed had resolved, and the tumor behind her eye was reclassified as fatty tissue.
Today, Avery is developing on track. She is a happy and strong little girl who can usually be found wearing a hat or headband, made by her mom. To increase awareness and help other parents of children with craniosynostosis, Sheila created Avery’s Angel Network, an online resource for families to come together and share their stories and information. Sheila also provides free handmade flower headbands for the girls and has just started offering special hats for boys with craniosynostosis.
“So many parents feel like they are not being heard when they think something is wrong with their child,” says Sheila. “I hope that, through Avery’s Angel Network, we can help educate parents about craniosynostosis and encourage them to be their child’s best advocate.”
For more information about Avery’s Angel Network, please visit www.averysangels.net.
Avery's craniosynostosis hasn't stopped her from filling the hearts of those around her with love.