AIKEN -- No parent wants to consider the option that they might outlive their child, but for one Aiken family, that is a real concern.
Kambria Essie Brown was born Sept. 18, 2009, to Ikonyus S. Garvin and Ronald C. Brown III. At birth, Kambria appeared healthy, and life was filled with numerous possibilities.
At 2 months old, Kambria developed a cold. When the cold wouldn't go away, Garvin and Brown decided Kambria needed to go to the hospital. At the time, the family lived in Lexington while Kambria's grandparents, Roxanne Coleman and Ben Summers, resided in Aiken. Kambria was taken to the hospital in Lexington but transferred to Palmetto Health Children's Hospital in Columbia and treated for a respiratory infection. Coleman and Summers joined the couple.
"She was just being treated for a cold, but she was gasping for air all night long," Coleman said. "The third-shift doctor said he wanted to move her to ICU, but they never moved her. In the morning, I asked the first-shift nurse why they didn't move us, and she said there weren't any beds and other babies were sicker. They felt they could continue monitoring her where she was."
This didn't sit well with Garvin, who insisted the baby be moved to ICU. When she was told this wasn't possible, she asked to be transferred to another hospital.
Kambria was transported by ambulance to the children's hospital in Charleston, and the family followed behind. They had no idea how the next 12 hours would unfold and the drastic changes that would come into their lives with just a few words from a doctor.
As Kambria settled into the new location, she was sleeping. The doctors ran X-rays of their own after detecting a possibly enlarged heart on the X-rays sent with her.
"Kambria woke up about midnight, and I fed her. She started gasping for air again," Garvin said. "They rushed her to ICU in the middle of the night and began running the tests they planned to run in the morning."
Garvin called her mother to tell her the news she and Brown had just been delivered: Kambria has a rare heart disease and must have emergency open-heart surgery.
Going into the surgery in the middle of the night, Kambria's loved ones were told there was a 33 percent chance she wouldn't survive the surgery but that it was a 100 percent chance she wouldn't survive without it.
Kambria underwent open-heart surgery during the early morning hours of Dec. 7.
Despite the severity of her condition, Kambria is a "feisty" young girl. She recovered from her surgery in record time and even amazed the doctors and nurses with her ability to bounce right back.
The journey is far from over for Kambria as she awaits a heart transplant. Her heart operates at 10 percent. On Monday, Kambria was back in Charleston undergoing another surgery to prolong the time before her first heart transplant is imminent. The longer they can wait, the longer her life will be.
The family has been advised that Kambria can receive only two heart transplants in her lifetime and will need to have a new one every 10 to 11 years. If a transplant is completed at this stage before she is 1 year old, it is almost certain Kambria won't live to be older than 20 or 21.
Life for Kambria will be much different than it is for her 2-year-old brother, Cameron. She will have to be homeschooled so as not to be exposed to illness, and she will not be able to run and play like other children because her heart is weak. After the transplant, she will have to take nearly 20 medications every day for the rest of her life.
The family travels back and forth to Charleston on a regular basis for doctors' appointments and surgeries, and the heart transplant alone is estimated to cost between $550,000 and $750,000.
The family has plans for several fundraisers in the upcoming months. In the meantime, accounts have been established at Regions Bank and SRP Federal Credit Union. Anyone wanting to make a donation may do so at any branch under the name of Kambria Brown Charitable Account.
"My prayer for her is to get well and that she would one day be able to run around with other kids," Garvin said.
"My prayer is for the Lord to heal her and that she live a long and prosperous life," said Summers as Coleman nodded in agreement, a tear sliding down her cheek.