Tetralogy of Fallot: Cooper's Story

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At 2 years old, Cooper had already overcome a lot: open heart surgery, angioplasty and several other procedures. Physically, he was doing well and meeting developmental milestones like walking, running and climbing. But he wasn't talking much and that concerned his parents. "He wasn't calling us mama or papa," says Shelley, Cooper's mom. "And we felt like he wasn't really understanding what we were saying to him."

Cooper At the family's urging, Cooper's pediatrician recommended early intervention services in Atlantic County, NJ, where they live. Specialists there encouraged the family to find a developmental pediatrician to assess Cooper.

The family knew just where to turn: Children's Hospital of Philadelphia (CHOP), where Cooper was born and successfully treated for tetralogy of Fallot (TOF) and pulmonary atresia. They called CHOP's Cardiac Center and were referred to the Cardiac Kids Developmental Follow-up Program, which provides evaluation and coordination of care for neurodevelopmental issues in children born with congenital heart defects.

For the next three years, the Cardiac Kids team made sure Cooper received the extra support he needed at home and at preschool. By the time he graduated from the program this summer at age 5, he had caught up with his peers developmentally. He was ready for kindergarten.

"Cooper is a very sweet, social and determined kid," Shelley says. "He loves to read and play with other kids and he knows he can do anything if he tries hard enough."

Prenatal diagnosis of heart condition

Cooper was diagnosed with a congenital heart condition before he was even born. At Shelley's 20-week gestational ultrasound, the obstetrician couldn't get a clear look at the baby's heart and referred the family to CHOP's Fetal Heart Program. After testing, Pediatric Cardiologist Hema P. Bhargava, MBBS, diagnosed the unborn baby with tetralogy of Fallot, a complex heart condition that includes a ventricular septal defect, an overriding aorta, pulmonary stenosis and hypertrophy.

"We were very scared, but the doctors assured us it was one of the more treatable heart conditions with a high success rate," Shelley says.

Shelley was carefully monitored for the rest of her pregnancy and gave birth to Cooper at CHOP's Garbose Family Special Delivery Unit, the world's first birth facility in a pediatric hospital for mothers carrying babies with known birth defects. Cardiologists confirmed Cooper had tetralogy of Fallot with pulmonary atresia, a condition that causes the heart to work harder to pump enough blood to the body.

Four days after Cooper was born, he underwent open heart surgery. When he was 7 months old, he underwent a subsequent angioplasty to treat his right pulmonary artery stenosis.

Despite Cooper's early health challenges, he was a happy baby with a curious nature, Shelley says. Cooper loved exploring the world around him. He learned to walk, run and climb on time or early. "He was actually a bit of a wild man, leaping off couches and climbing everything," Shelley says. "Physically, he met all his milestones, but he wasn't talking very much."

Neurodevelopmental evaluation

Cooper was almost 2 years old when clinicians at CHOP's Cardiac Kids Developmental Follow-up Program evaluated him and determined his communication skills were more delayed than his family had thought. Neuropsychologist Lyla El-Messidi Hampton, PhD, gave them the news.

"Cooper's receptive communication was about the same as a 10-month-old, and his expressive communication was like a 14-month-old," Shelley says. "He had a lot of catching up to do."

For the next year, Cooper received early intervention services three times a week from speech therapists and developmental interventionists.

School days

When he turned 3 years old, Cooper began public preschool with other children who needed extra help getting ready for school. He continued receiving speech therapy, but at school instead of at home.

Every day, Shelley asked Cooper what he did at school. For weeks, he couldn't tell her. "He didn't understand what I was asking," Shelley says. "One day, he finally understood me and responded, 'I play in kitchen with Leah.'"

That was just the first of many breakthroughs for Cooper. When he turned 4, Cooper began preschool in an inclusion classroom — learning side by side with typically developing children. He continued speech therapy once a week, and monthly physical therapy was added to assess and build his coordination skills and core strength.

This summer, at a pre-kindergarten camp, Cooper's teacher said he fit in well with the rest of his peers. There was no area where he needed extra support.

"He's finally caught up," Shelley says.

We're so thankful that he had all the support from CHOP, early intervention, his teachers and therapists to get to where we are now.

Living in the moment, planning for the future

Now 5 years old, Cooper is a kindergartener in Atlantic County, NJ, where his sister Rowen is in second grade. Cooper no longer needs an individualized education plan (IEP), but Dr. Hampton encouraged the family to apply for a 504 plan so Cooper can take rests, get water, and ask for extra support when he needs it.

At school, Cooper is getting to know his peers, learning the basics of reading and writing, and being introduced to subjects like language arts and math. He loves reading, talking about and playing superheroes, and can't wait to be Hulk on Halloween. He also loves to show off his "brave line," what he calls the scar on his chest from his open heart surgery.

Along with school, Cooper is keeping busy with karate and soccer. He was also recently medically cleared to ride rollercoasters — which he loves, his mom says.

The Cardiac Center team will continue to monitor Cooper's health as he grows. For now, he sees Dr. Bhargava annually, and will check in with Dr. Hampton after first grade to ensure his neurodevelopmental skills are on target.

"We know Cooper will need heart surgery again to replace the heart valve conduit he received as a baby," Shelley says, "but we're hoping to postpone that as long as possible."

CHOP doctors recently told Cooper's family that he may be a good candidate for a transcatheter pulmonary valve, which could delay the need for open heart surgery.

"We just want to do what's best for Cooper," Shelley says. "We want him to enjoy life, to do what he wants and not feel restricted."

What does Cooper want for his future? To be a police officer — at least today.

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