Inspiring Lee County child reminder of need for pediatric specialists in Southwest Georgia

ALBANY — Based on his demeanor, you would never know the medical challenges that 3-year-old Bennett Jones of Lee County and his family have endured.

His mother, Laura Jones, who already had two older children, worked in the obstetrician’s office where she received her prenatal care while pregnant with Bennett. While she was carrying him, her abdomen grew practically overnight. Initially thought to be a chromosomal disorder, an ultrasound ultimately revealed that the problem was her son’s heart.

“I felt my world had turned upside down,” she said. “I didn’t know if they could help him. They assured us that (he would undergo) a series of procedures (to help fix the problem), but that he would have problems through adulthood.”

“The day we found out, my husband and I sat here (in the living room) and thought: ‘What are we going to do now?’ We thought the worst. We thought he would not survive.”

Bennett was diagnosed with a congenital heart defect known as critical aortic valve stenosis at 33 weeks gestation. He was delivered at 38 weeks at Northside Hospital in Atlanta and transported that same day to the Children’s Sibley Heart Center at Children’s Healthcare of Atlanta, where he went through multiple surgeries and procedures, including a valvuloplasty just 24 hours after birth. After the first surgery, he was ill enough to be put on extra-corporeal membrane oxygenation

He went home after two weeks. At two months, he suffered heart failure and was sent back to Children’s. In March 2011, surgeons replaced his aortic valve with his own pulmonary value, and replaced the pulmonary valve with a donor valve. Catheters and stents were placed to help open the valve.

Bennett cannot go to daycare due to liability concerns, he tends to tire a little more and he takes medications to help his heart function, but other than that, he is now doing great, But that doesn’t remove the fear, his mother says.

“I’m still scared of the unknown,” his mother said. “I’m not afraid of everyday life with him … I just worry about surgeries, that he will come out of it with complications. I don’t have a problem leaving him with people; it’s just when he gets sick that I get nervous.

“He plays with others, he has a brother and sister he plays with, he swims and runs outside. Everything everyone else does, he does.”

Bennett will be able to attend school with his peers when he is old enough, although it is expected that contact sports will be off limits, his mother said.

Bennett’s next surgery at Children’s will likely be next spring to replace his pulmonary valve, unless a need is shown for it earlier. In the meantime, he is seen regularly by Dr. Brian Cardis, one of the physicians who has been at the Albany clinic of the Sibley practice located on West Fourth Avenue.

On July 15, the clinic in Albany began seeing patients four days a week to meet the demand for pediatric cardiology specialists in south Georgia, along with clinics also operating in Valdosta and Tifton. It has three pediatric cardiologists — one of them full-time — available for children like Bennett, who often make their way to the clinic by way of a primary care physician referral.

“It started as an outreach clinic,” Cardis said.”There was no access nearby. Prior to that, the nearest was in Macon and Columbus.”

It started off as a monthly thing, and the demand became as such that a permanent clinic was opened in the downtown Albany area. Currently, they are at around 40 patients a week.

“We were finding that a lot of patients were having to drive more than two hours,” Cardis said. “Some of the children have severe heart disease and need to be seen quickly. Frequent visits are not easy when families have to drive two to three hours one way.”

Sibley is able to start seeing babies before birth and up until they are 21 years of age for anything ranging from congenital defects to chest pain to high blood pressure.

“There are a wide range of things we take care of,” Cardis said.

In cases such as Bennett’s, multiple procedures become necessary because the child will eventually outgrow interventions that are taken — causing quality of life to wax and wane.

“In adults, you replace the valve (and it remains there),” Cardis said. “The problem with children, in Bennett’s case … the valve is too small and will not grow with the child.”

Children such as Bennett can serve as an example as to the need for a pediatric cardiology clinic.

“Early recognition of what Bennett has … (early diagnosis) of critical heart disease in a newborn is very helpful and (improves outcomes),” Cardis said. ” … Having local access to that is helpful.

“If Bennett complains of chest pain, his family doesn’t have to drive two hours. Having something local is a tremendous asset. Many patients in the area don’t have transportation. Medicaid provides transport, but you have to give 72-hours notice.”

While it is not a service she uses that often, Jones said having the clinic here has provided some piece of mind knowing that it is available — so that there is someone here familiar with her son, the medications he is taking and how that might impact other aspects of his care.

“It makes me feel better there is someone here … should he go into distress,” Jones said. “It gives me (significant) peace of mind … I wouldn’t have to drive to Macon in an emergency. It’s great to have the specialty come to (the area). I have two other healthy children; I wouldn’t have thought of a specialty like this until Bennett came along. I realize it is a needed thing here.

“It could make a difference in lives saved. I think we should have other specialties here — like neurology. It cuts expenses and time off of work.”