When Stacey was pregnant, the doctors didn't think her baby would survive birth. If she did, she probably wouldn't live past age two. Stacey's first sonogram revealed that Hayli had spina bifida, which involves an incomplete closure in the spinal column, as well as severe hydrocephalus, which is the abnormal buildup of cerebrospinal fluid in the ventricles of the brain.
A second sonogram and amniocentesis then diagnosed Hayli with Trisomy 13 Syndrome, a disorder of human chromosomes that occurs in about one out of every 5,000 live births. It causes multiple abnormalities, including congenital heart discord, severe apnea, mental retardation, deafness, blindness, an abnormal count in fingers and toes, enlarged forehead, and small eyes and ears. According to the National Library of Medicine, more than 80 percent of children with Trisomy 13 die in the first month.
"I didn't know what to think," said Stacey. "I was a mess, my head was racing and I had so much rage and confusion. Then I just prayed and God gave me peace. I knew at that moment that it was going to be okay."
When Hayli was born, the specialists were stunned. "The genetic specialist said she didn't have Trisomy 13, even after the amniocentesis had shown that she did," said Stacey. Instead, the doctors used the term "chromosome abnormality" to describe Hayli's condition. She also has spina bifida, hydrocephalous, and reactive airway disease, is almost blind in her right eye and has 70 percent hearing loss in her left ear.
"We went through eight months of thinking she was going to die in the womb, but our faith told us differently," said Angelo. "My wife was very strong; she really helped me through a lot."
For the first two years of Hayli's life, the whole family didn't sleep much at all. But an early intervention program provided the support and guidance the Martoranas needed.
Hayli had five surgeries within her first year. "Your heart just aches when you child has to go into the hospital," said Stacey.
Hayli fed slowly from her bottle because she was born with a cleft palate. At five months, a feeding team began to teach Hayli to drink food from an open mouth cup. Four months later she accomplished this, and the cleft palate could be repaired.
Therapists came to the house to teach Hayli to use her throat properly to make sounds. They also taught her to use her muscles, and at age three, she began using a walker with assistance.
Hayli started at Aspire Center for Learning (CFL) in September 2004, just after learning to use her walker. She was enrolled in the preschool program, which is integrated with the Aspire Children's Discovery Corner day care. The program focuses on teaching children lessons in caring and sharing, while developing the important behavioral, social and pre-academic skills needed for the transition to kindergarten. The CFL would provide Hayli with occupational, physical and speech therapies, vision, health and education services through a team approach.
At the time, Stacey wanted Hayli's orthopedic doctor to fit her with ankle foot orthoses (AFO) braces, but he didn't feel they were necessary. "Hayli was trying so hard to move, but she was flimsy from her knees down," said Stacey. "I thought not having braces was preventing her from making progress."
Stacey shared the doctor's objections with Hayli's physical therapist at the CFL, Cathleen Riso. Cathleen offered to attend the next orthopedic visit to advocate for the braces. "The doctor gave Hayli braces and she just started escalating from there," said Stacey. "She could use the walker by herself."
Hayli's therapists believed she could learn to walk without relying on a walker. Whenever Hayli hit a comfort zone, the therapists would give her the push she needed to take the next step.
First, Hayli learned how to use crutches and began using stairs. Still, the therapists said Hayli had grown too accustomed to holding onto something, and traded the crutches in for a broomstick. The therapists lightly held one end and gave the other end to Hayli. In reality, Hayli was walking by herself, without placing her weight on anything else.
The therapists told the rest of the Aspire team that they did not want them to hold Hayli's hand. "They wanted her to walk from class to class with the teacher holding onto a Lego or Lincoln Log, and Hayli holding onto the other end," said Stacey. "Then she wouldn't rely on physical touch with someone."
It worked. In November 2005, Hayli started walking through the halls without holding onto anything. "It was immeasurable to see her face when she realized she could do it without any assistance," said Suzanne Eddo, one of her physical therapists.
The Martoranas could not understand how their daughter was walking independently at school. At home, Hayli was still crawling. "I was so upset," said Stacey. Then, she and her husband attended the CFL Thanksgiving brunch, where they saw Hayli walk for the first time.
"Hayli was walking all over the gym," said Suzanne. "Her parents were just baffled. It was the best moment a physical therapist could ever have!"
Two months later, Hayli was still not walking at home, and Angelo and Stacey were growing more distressed. Angelo said to Stacey, "I think she is honestly pulling one over on us." They agreed to set a new house rule. Angelo explained to Hayli that she needed to walk at home like she walked at school, or she would have a time out.
"Hayli started crawling, I gave her a time out, and she started crying," said Angelo. "I calmly explained that she needed to walk. I said, 'Mama walks, dada walks, your sister Taryn walks, even Rudy the dog walks.' She cleaned up her nose, said OK, got down off the bed and she has walked ever since."
The Martorana's credit Aspire's skilled therapists, along with Hayli's strong personality and determination, for their daughter's progress. "I love the fact that we chose Aspire," said Stacey. "I think very highly of all the therapists. If they had been softies, she wouldn't have come so far. She's so much more than what the doctors first said she was going to be. I wouldn't even want her any other way."
Angelo agrees. "Hayli has been a saving grace in this house. She has changed my perspective on so many things in life. I love everything about her."
Hayli has successfully stepped out of another comfort zone. Last June, she graduated from the Center for Learning. Today, Hayli attends kindergarten in a typical classroom in the Tonawanda School District. "There's still a long way to go, but she's doing very well at her own pace," said Stacey.