Little survivor learns to walk and talk

For Jason and Hope Valvero, the evening of Jan. 18, 2010, began like any other night. The couple was resting in their St. Charles County home, less than a month before the expected delivery of their first child, Claire.

A few hours later, Jason was standing in an emergency room as a doctor told him his wife and newborn daughter might not survive the night.

“I was in la-la land,” Jason said. “It was surreal. I thought, why is this happening, and why is it happening to us?”

There had been no hint of trouble during Hope’s 36-week pregnancy, no symptoms warning she had peripartum cardiomyopathy, a rare disorder that can trigger heart failure in pregnant women.

Hope had suddenly begun gasping for breath. Jason called 911. As soon as Hope reclined on the ambulance stretcher, she fell unconscious. She would not awaken for five days.

At Barnes-St. Peters Hospital, surgeons delivered Claire by C-section. The baby was not breathing. Doctors spent 30 minutes trying to resuscitate her.

“They Baptized her three times,” Hope said. “They sprinkled her with water and she finally took a breath.”

Doctors allowed Jason to touch his new daughter before transporting the baby to St. Louis Children’s Hospital. They told Jason he should stay with his wife. They had stabilized Claire, but Hope’s survival was still in question. She had a collapsed lung, pneumonia, and was losing blood.

Hope, in a chemically-induced coma, remained on a ventilator at Barnes-St. Peters while doctors fought to save Claire in the Children’s Hospital neonatal intensive care unit. It was in the NICU that staff and family began calling the tiny survivor “Claire Bear.”

Seven days later, Hope was conscious and off the ventilator, but had yet to see her new daughter. She was transferred to Barnes-Jewish Hospital in St. Louis so she could finally meet Claire.

The baby had been fussy and uncooperative before Hope arrived. Hope said, “Hi, what’s going on?” Claire immediately smiled and calmed down.

“From that moment, everything started getting better,” Jason said.

But Claire was still at risk. An MRI revealed oxygen deprivation had damaged her brain. Claire had cerebral palsy. She would not have the strength to feed herself. Doctors inserted a feeding tube portal in her stomach and trained her parents on how to feed her. Claire, 42 days old, finally went home.

Besides being unable to eat through her mouth, Claire’s low muscle tone meant she would have difficulty learning to walk or hold her head up. Hope and Jason had difficulty finding a daycare that could accommodate Claire’s special needs.

“I asked one daycare if they took children with a feeding tube,” Jason said. “The woman on the phone said, ‘A what?’ I said, ‘Never mind.’”

The Valveros learned there were only two centers in St. Charles County that could accommodate Claire’s needs. Both were operated by United Services for Children.

“From our initial phone call to United Services through our first visit, we felt extremely comfortable,” Jason said. “We felt good knowing there was an organization that understands what parents of special needs kids go through. It made us feel relieved.”

United Services for Children operates two pediatric therapy and developmental learning centers; United Services East in St. Peters and United Services West in Dardenne Prairie.

Claire was 10 weeks old when she entered United Services’ St. Peters center. Three years later, she is still enrolled in the agency’s early intervention and early childhood education services, receiving physical therapy, occupational therapy and speech therapy.

Claire requires fulltime therapy and round-the-clock care, Jason said. But he and Hope have fulltime jobs, sometimes working evenings and weekends.

“Therapists tell us that, with the hours we put into our jobs, when we get Claire at home, we just need to have fun with her and play with her,” Jason said.

The Valveros said the trust the therapy team at United Services to guide them in making decisions about Claire’s needs. The therapists have become part of the Valveros’ “extended family,” Jason said.

Claire’s giddy personality brings a smile to everyone she meets. As she walks down the halls of United Services, teachers and therapists stop to say, “Hello, Claire Bear.”

But until recently, Claire could hardly walk at all. Janet Estes, a licensed physical therapist assistant (PTA/L), began working with Claire in June 2013. Claire was using a supported wheel chair with a head rest, requiring an adult to push her. Estes wanted to improve Claire’s posture and mobility.

Estes put Claire in an adapted walker with arm and trunk supports. Now Claire can use the device to walk by herself or with minimal assistance. She proudly shows off how she can pull her body to a standing position, something she could not do before.

“I see progress with Claire practically on a weekly basis, and that is remarkable,” Estes said. “She has realized that all parts of her body are instruments of moving.”

When Claire becomes excited, she grins, kicks and waves her arms. But now she is progressing beyond body language and learning to communicate verbally.

Margarette Sellars, M.S., CCC-SLP, is Claire’s speech-language pathologist. She is working to build Claire’s vocabulary. Claire is cognitively on the same level as her peers. But because of her motor planning difficulty, it is easier for Claire to communicate using single words. For instance, “outside” instead of “I want to go outside.” Sellars said Claire has progressed to using three-word sentences, like “I want drink.”

Sellars said Claire used her expanding vocabulary one day when she observed her teacher was upset over a personal matter. “Claire said, ‘I love you’ to make her teacher feel better,” Sellars said.