By ALIYA FELDMAN
Leader editor
Eighteen-month-old Christine Clemons has already faced more than most people do in a lifetime. She’s had two open-heart surgeries, visits with doctors every two months and is being closely monitored for the time when her only working lung stops functioning.
But 8 o’clock Thursday night her mother had to chase her around the house in an attempt to get her to go to sleep.
Only by seeing Christine’s surgery scar would someone know that her health is compromised. She is slightly small for her age; she weighs 19 pounds. But she is active, full of energy and very happy.
“One of her lungs is not receiving any blood flow at all,” said her mother, Jammie Clemons of Searcy. “Her right lung and heart are handling everything.”
She was born with a hole in her heart. At three days old, she underwent open-heart surgery at Arkansas Children’s Hospital in Little Rock. The congenital heart disease diagnosis came as a surprise to Jammie and her husband, John, because no one in their families has had the same issue. “She’s the first,” Jammie said.
Before surgery, her mother and dad were told there was a 10 percent chance that there could be an error in the way the veins reformed. The result was a rare condition called anomalous pulmonary venous stenosis.
She was in the minority of children who after heart surgery stop receiving blood in their lungs, what her family calls a “plumbing problem.” She had a second surgery at 6 months old, when scar tissue was scraped out of her heart. But that didn’t help the little girl’s condition.
Her mom says she is on a waiting list for a lung transplant but is considered inactive because one of her lungs functions normally. Luckily, she’s not in a life-threatening state. But her parents and other family members who help care for her must monitor her closely.
Part of caring for their daughter means the couple has to travel to St. Louis every four months for a three-day visit with lung specialists there. “They have sent us to St. Louis Children’s Hospital because their specialty is lungs,” Jammie said.
“They don’t know when she’ll need the transplant,” she said. One might be needed in just a few months or it could be several years. “She could get into adulthood before she needs a transplant,” Jammie said.
Until the time comes for their daughter to get a new lung, they have to be conscious of her activity level and how much she’s eating. They watch her to see if she’s low on energy or doesn’t have an appetite, which are signs her lung is failing.
“When she stops being as active as she is, that’s how we know something is going on,” Jammie said.
Christine sees her doctors in Little Rock every two months. She’ll next travel to St. Louis in September. While a lung transplant could cost $500,000, Jammie said the family has insurance which should cover much of the cost. But the doctors’ bills still add up.
Children’s Organ Transplant Association is helping the couple raise money to help them with co-pays and deductibles.
Christine’s parents are also seeking help with their expenses while they stay in St. Louis.
Jammie and John have good jobs. She works for an investment brokerage company and he is an oiler. They also own a film conversion company together. But they have to take time off to care for Christine.
Jammie said Christine’s wonderful spirit has remained despite how much time she’s spent with doctors. “She doesn’t mind the cardiologists,” Jammie said. “But she can’t stand to see her pediatrician.”
She cries when she sees him because of the 6-month series of shots she must get every winter to combat RSV (Respiratory Syncytial Virus). While it’s an illness most children recover from, for Christine, RSV would put her fragile organs in a state of shock.
“The family does things differently,” Jammie said. “We wash our hands a lot. If one of us is sick or a little under the weather, we stay away from her.” They also are cautious in public.
“We taught her to give people five,” Jammie said. “So people don’t touch her on her face. We’re so careful with germs. Any bug could be a serious problem.”
The couple doesn't want to move to St. Louis because they rely on their parents to help care for Christine. “We want to come back to Searcy,” which is why they are seeking financial help, Jammie emphasized. Christine’s grandparents, James and Gayla Ballard, live in Searcy, and Bobby and Thelma Clemons live in Newport.
To access the money raised through COTA, Jammie and John must file expense reports and all of their receipts. They’ve been given $3,200 so far. COTA estimates they will need $75,000 to cover care associated with Christine's condition. COTA, located in Bloomington, Ind., helps children who need life-saving transplants.
Volunteers are needed to assist with fund-raising. Individuals and groups interested in more information can contact Pam Smith at 501-593-5650 or Pam.Smith@COTAforChristineC.com.
Donations may be made at any Regions Bank branch using account number 0112271160 or mailed to the Children’s Organ Transplant Association, 2501 W. COTA Dr., Bloomington, Ind., 47403. Checks or money orders should be made payable to COTA, with “In Honor of Christine C.” written on the memo line of the check. Credit card donations can be made online at www.COTAforChristineC.com.