Robert ‘has got a lot of heart’

His, though, is different from yours
AC Rocks for 4 Robert rock-a-thon fundraiser set for Oct. 3

By Kevin Spradlin

* Video: What is Tetralogy of Fallot?
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* Soccer team Facebook page

ROCKINGHAM — Robert Potter celebrated his 11th birthday in August.

At this point, he should be most concerned with his primary loves in life — soccer, math, girls and video games, not necessarily in that order. But the sixth-grader at Rockingham Middle School has something else on his mind.

Kevin Spradlin |

Kevin Spradlin |

About a month from now, Oct. 23 to be exact, Robert and his parents, Wayne and Hope, will travel to North Carolina Children’s Hospital in Chapel Hill. He’ll turn from starting goalie with a No. 8 on his back to a patient. He’s having this third open heart surgery. This time, it’s for a pulmonary valve replacement.

The plan is to install an article pulmonary valve replacement. Using an artificial one instead of one from a pig, the idea is that it’ll last longer — seven to 10 years — and make it easier for inevitable future operations that come with the condition.

Blue baby syndrome

Robert was born at FirstHealth Moore Regional Hospital. Two days after being discharged from what was perceived by doctors there to be a normal delivery, a doctor from Chapel Hill called.

Wayne said the doctor had reviewed Robert’s EKG.

“He wanted to know why (Moore Regional) sent him home,” Wayne said.

A strong blue color was visible around Robert’s eyes and mouth — but not all over his body, which is a telltale sign of Tetralogy of Fallot.

Kevin Spradlin | A third open heart surgery will take Robert Potter, 11, from his position as goalie on the AC Rocks U12 travel soccer team.

Kevin Spradlin |
A third open heart surgery will take Robert Potter, 11, from his position as goalie on the AC Rocks U12 travel soccer team.

Tetralogy of Fallot is a cardiac anomaly and congenital — read: born with — heart condition that refers to a combination of four related heart defects. The condition limits blood flow to the lungs, according to information from Cincinnati (Ohio) Children’s Hospital website. When blood flow to the lungs

is restricted, the combination of the defects allows oxygen-poor blood. In other words, Robert’s blood turns blue. It’s a sign of bad things to come.

Robert was taken to North Carolina Children’s Hospital. He was there for nine weeks. There were “a lot of complications,” Wayne said, from what was his first open heart surgery.

At 7 months, Robert underwent a second open heart surgery. Fluid was building up around his heart.  One morning, at about 2 a.m., warning sounds blared and nurses rushed in. Robert was losing the battle.

“They drained so much fluid from his chest,” Wayne said. Doctors said that had they waited another month, “he wouldn’t make it.”

Doctors installed a pump with a primer much like on a weed eater, Wayne said. It was a first in North Carolina and among the first in the world. The pump, when pushed, hurt. But it would drain the area around the heart and allow Robert to breathe.

Kevin Spradlin |

Kevin Spradlin |

The doctors had tried to get blood from everywhere, even from the veins in his head. Robert was losing the battle. The doctors were stumped.

Doctors put in a PICC line — “they actually tried to get blood from veins in his head — and gave the Potter family some unusual advice. Wayne said doctors wouldn’t discharge Robert, but they reached the point where they said “take him to the mall and don’t come back” to the hospital.

They did, but listened to the doctors’ recommendations on a diet that include non-fat milk. Wayne said he and Hope watched and cared for Robert, who showed no signs of improvement. One day, Wayne said the two reached a point where they decided to “feed him what we wanted to feed him.”

That included simple things like whole milk.

‘I wanna play for Barcelona’

Robert is a soccer player. He aspires to play for Barcelona, an elite professional club in Spain. For now, he is an all-star goalie with the AC Rocks U12 travel soccer team. He’s pretty good.

Image credit National Heart, Lung and Blood Institute The difference between a normal heart and one with tetralogy of Fallot

Image credit National Heart, Lung and Blood Institute
The difference between a normal heart and one with tetralogy of Fallot

His coach, Pat Moss, has guided Robert’s development in the sport for the past six years. Moss hates to see a player go down. He winced when a player was accidentally kicked in the shin by the cleat of another player Wednesday night during practice at Washington Street Elementary School. But a kid like Robert — well, it’s even that much more difficult.

“Robert’ has got a lot of heart,” Moss said. “The fact that Robert’s even able to play soccer … is sort of amazing.”

Robert,  Moss said, is not your typical goalie. Not quite as tall. Not yet quite as strong.

“But he’s really amazing.”

When he’s not feeling well, the skin around his eyes and lips are the first to appear a blueish color.

“The more active he is the more you’ll see it,” Wayne said.

Robert said he feels “normal” most of the time. Until, that is, “it gets real bad.”

Then it gets real bad quickly.

Each practice goes for about 90 minutes. At Wednesday’s session, Robert stepped off the field earlier than anyone else and sat down with his dad. He felt a bit winded. Below the eyes, a hint of blue. And Wayne said that’s nothing. The problem is he’ll normally go through an entire practice without complaint.

“If you went home with us after practice, (you’d see) he crashes,” Wayne said.

AC Rocks 4 Robert

Wayne is a live haul manager with Perdue in Rockingham. Hope is a preschool teacher for 3-year-olds at Roberdel Baptist Church. With Robert, they are a typical American family living the dream. The cost of the operation is going to hurt.

At least a six-figure ordeal, Wayne’s health insurance will cover about half the cost. Robert’s primary doctor in Chapel Hill, he said, “is not in our network.”

This image, taken from an AC Rocks team video during a recent tournament in Charlotte, shows Robert Potter passing through the parents' tunnel.

This image, taken from an AC Rocks team video during a recent tournament in Charlotte, shows Robert Potter passing through the parents’ tunnel.

Robert’s extended family — his soccer family — is working to lessen the pain as much as possible. While Wayne’s insurance through work will cover about half of the cost, that still leaves a bare minimum of $50,000 for which the family needs to raise to pay for the operation. That doesn’t include the time lost from work, or living expenses, while they stay with Robert in Chapel Hill for up to two weeks after the operation.

Wayne and Hope don’t plan to leave Robert’s side. And their soccer family doesn’t plan to leave theirs. Led by Angel Mabe and Pam Meacham, coach Moss and the 12 other other members ACS U12 boys soccer team is hosting a fundraiser on on Oct. 3 at Cordova United Methodist Church.

The AC Rocks 4 Robert is a seven-hour affair, starting at 6 p.m. From 7 p.m. until 1 a.m. Saturday, Robert’s teammates will literally be rocking — in rocking chairs — to raise money. Teammates and family members are working now to solicit pledges and donations. Other than direct donations, which certainly are accepted, the idea is to have people pledge a certain amount of money for every hour of rocking.

AC Rocks is a countywide team. Players attend Rockingham, Hamlet and Ellerbe middle schools as well as L.J. Bell Elementary School.

Robert will be unable to play soccer for about six months. But he’ll be alive, and looking forward to a fall soccer season with his travel team, which plays through November. He should have no problem making it back on the field in time for the team’s tournament in Myrtle Beach next October.

* * * 

For more information on how to donate to AC Rocks 4 Robert, call Pam Meacham at 910-995-4011 or Angel Mabe at 910-995-5122.

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  • http://yahoo rick

    Robert is a true survivor and seems to let nothing get in his way. Its time for everyone in the community to step up and help as much as they can. He is an exceptional goalie and child and a true survivor. God bless Robert and his family.

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