Jessica Colter had her first open-heart surgery at one week old. Jessica, junior, was born a perfectly healthy, pink baby, but 10 hours later, she turned blue and doctors rushed to perform tests on her. Seven days later, she went to the operating room for the first time.
Jessica has Truncus Arteriosus, a heart defect where the aorta and pulmonary artery are merged together. She has had two other surgeries, one when she was 10 and the other at 14. Jessica has also had nine cardiac caths, a procedure in which stents are placed in the groin area in an attempt to fix or slow down issues and put off surgery.
Jessica’s mom, Carol, had no idea anything was wrong while she was pregnant with Jessica. When her newborn daughter was rushed away for testing, she found herself in denial.
“I kept thinking to myself, ‘Not her. Not me. This is not true. It’s not happening,’” Carol said. “I was just in a daze.”
Jessica was transferred from St. John’s to St. Louis Children’s Hospital, and once doctors determined her diagnosis, she was put on a waiting list for a new pulmonary artery. While Jessica waited at Children’s Hospital for an available organ, her mother remained for several days at St. John’s, a period Carol describes as very anxious and difficult.
Five days later, a pulmonary artery became available, and Jessica had surgery.
“The doctors were amazing,” Carol said. “They were all very good at explaining what was wrong with Jessie and how it wasn’t my fault at all.”
Ten years later, Jessica began to sense something was not right with her body. After simply walking up a flight of stairs or making a short trip to the mailbox, she felt winded and exhausted.
“Little kids are supposed to be full of energy, and I just had no energy,” Jessica said.
Soccer, figure skating and gymnastics became too much for Jessica to handle. She recalls feeling particularly sad as a fourth grader being unable to go to gym class with her friends. Jessica went to see her doctors who performed more tests and told her she would need to have another open-heart surgery.
“I remember the first question I asked was ‘Am I going to die?’” Jessica said. “I was just terrified because even though I’d had it before, I couldn’t remember. I guess it was just kind of shocking to hear I would be getting surgery again.”
While recovering in the hospital, one of Jessica’s nurses told her about a charity for kids with life-threatening illnesses called Make a Wish Foundation.
“I thought it was only for kids with cancer,” Jessica said, “but one of my nurses told me it was for kids with any life-threatening illness.”
Jessica’s wish to meet Dylan and Cole Sprouse, the stars of one of her favorite shows at the time, “The Suite Life of Zack and Cody,” was granted, and she got to spend a day with the twins.
“It was awesome,” Jessica said. “I got to eat pizza and hang out with them in their little school area and sit in the audience that has people laughing in the background while they filmed”
After the surgery, Jessica spent six months out of school, taught at home by a tutor and unable to return to the sports she had previously enjoyed.
Jessica still deals with heart complications today, undergoing tests every six months and continuing to experience shortness of breath and exhaustion. As a cheerleader, she is only able to be a flyer because the floor routines are too strenuous, but Jessica manages to see a bright side.
“I actually always wanted to fly, so in that way it’s almost kind of an advantage,” Jessica said.
While she keeps a positive outlook, Jessica’s heart complications are still there, and she knows that she will need future surgeries, a realization that Jessica said is nerve-wracking. Doctors hope her most recent surgery will last 10 years, but her surgery in fourth grade was also supposed to last 10 years and actually only lasted four.
Jessica constantly amazes her family with her ability to stay positive and make the best of her situation. Although it is difficult for Carol to see her daughter endure such obstacles, she is proud of the way Jessica handles her challenges.
“It’s heart-wrenching to watch,” Carol said, but it’s amazing the strength she has to go through everything she has with such grace.”
Carol said although the surgery was a difficult experience for all of the Colters, it ultimately brought the family together.
“I think she is especially closer with her brother,” Carol said. “Knowing that Jessie could have died and is still here with us is just such a blessing.”
