From heart murmur to heartbreak to happiness

Kathy Bull remembers the pure delight she felt 33 years ago gazing at the tiny face of her newborn.

“I was happy. It was my first child, and I was ecstatic over her. I thought she was the most beautiful thing in the world.”

Her pediatrician came into her room at Regional Medical Center in Orangeburg to temper her excitement. Bull says she had been warned her baby had a heart murmur. “I just figured it was a heart murmur. Many people have one. No big deal, right? It really didn’t hit me any kind of way.”

The face of her pediatrician said otherwise.

“He came in and said, ‘Mrs. Creech, you need to know, this is nothing to sneeze at. You won’t be going home. We’ll be sending you straight to the Medical University of South Carolina,’” she says. “It was at the point, I realized there was something really wrong.” Creech was Bull's last name at the time.

When she arrived at MUSC, she saw pediatric cardiologist Ashby Taylor, M.D., who immediately did an echocardiogram and other tests on her daughter, Katherine Crystal Creech, aka “KC.” 

They got Kathy to sit in a wheelchair.

“I knew this wasn’t going to be good. He started writing down what was wrong. He would write a No. 1 and then write out a defect and explain what it was. Then he would write No. 2, parenthesis and write another defect out. Then No. 3, No. 4., No. 5. By No. 5, I kind of lost it. She had so many severe, congenital heart defects.”

Taylor told it to her straight. KC had only one functioning pumping chamber and other issues included transposition of the great arteries, atrial septal defect, ventricular septal defect, patent ductus arteriosus, tricuspid atresia and pulmonary stenosis. Her daughter was unlikely to make it through the weekend. He sent them home and contacted doctors in Orangeburg as well as their hometown emergency room.

“Of course, that was very upsetting and very hard to swallow. Dr. Taylor said, ‘You take her home. You love her, cuddle her, be close to her - that’s all the advice I can give you.’”

That’s exactly what Kathy did. While she napped during the day, her mother would watch her. “At night, I would watch her and pick her up to feed her when she needed it.”

Monday came. Miraculously, KC was still breathing. The family headed back to MUSC to figure out the next step. Doctors found she had another defect that was compensating for the others. “They found all her defects were somehow working together for her in a way to keep her alive.”

Fight for life

Kathy knew her child would be more susceptible to illnesses, but tried to keep her life as normal as possible. That’s what her cardiologists recommended. 

In 1988, 4-year-old KC came into the hospital for her first open-heart surgery, a risky Fontan procedure. KC would be only the third or fourth child at the hospital to have the procedure done. It is used in pediatric patients who have only a single functional ventricle to pump blood. It involves redirecting oxygen-poor blood from the top of the body to the lungs

Recovery was touch-and-go. Camped out in the waiting room with a lounge chair, blankets and a pillow, Kathy remembers a nurse coming up to her at one point with a grim look. They were losing her daughter. 

Kathy rushed back and watched the drama play out on the monitors. “She was so tiny and little. She was just frail. Her eyes would open to look at me, and they would close back. As I would look up, I could see the monitors and see her vital signs dropping, and there was absolutely nothing I could do to stop them.”

Doctors offered to do an emergency procedure to drain fluids to see if that would help. Kathy agreed, knowing there were no other options. “It was a very scary, scary moment.” 

KC made it through and had to be tube-fed to help her gain weight. Time “rocked on” and they were moved to another suite in the Children’s Hospital. KC turned 5, and they had a birthday party. The family was supported by a stream of visitors and cards and offers of prayer. KC strung up the cards from one corner of their room to the other.

“It was like a big family to us. The nurses and everybody, we all were all on a first-name basis with each other.”

Oddly enough, what kept Kathy’s spirit uplifted was the bond she formed with other parents. MUSC Children’s Hospital has a spacious, open atrium where kids may play. Kathy watched children with cancer and other life-threatening diseases parade through. It became a sanctuary for her. She realized she wasn’t alone in her struggle.

“There were so many sick children. I realized other people feel what I feel like. “ Kathy started putting her daughter in a wagon and visited other children. “I realized there were children in there who didn’t have families or a mom who would stay with them 24 hours and watch over them.”

Kathy made it her goal to visit the ones who rarely had family to visit. “You think you’re by yourself, and then you see these children who have no one.”

Finally, after several months, KC was ready to leave the hospital. Five nurses who had grown close to them planned a beach trip. Kathy holds up a photo, showing them all playing in the surf. MUSC staff truly became family to them.  

There would be other procedures and a diagnosis of Raynaud’s disease that causes some areas of the body to turn white and feel numb and cold. “It would hurt her so bad when the feeling would come back,” Bull said. Her mom would take her hands under arms to warm them. “I’d do anything I could do to help heat her up.”

Then next hurdle was a serious case of pneumonia and KC, then 10, had to be put in the intensive care unit. It was the first time KC told her mom she felt she wasn’t going to make it. “She’s tough. She had made it through open-heart surgery, the Fontan, the pleurovac, but she hit a wall. She just felt that bad and couldn’t get enough oxygen.”

Doctors dosed her with antibiotics and finally got her back on her feet. She did well until just before graduation, when she kept going into a-fibrillation, an irregular and often rapid heart rate that can increase the risk of stroke, heart failure and other heart-related complications. She had to be shocked to get her heart back to a regular rhythm. Doctors decided to do a surgery, Fontan Revision, another risky procedure. 

At the time, there were doctors at other hospitals with more experience in doing the procedure. Kathy asked her daughter, now 18, what she wanted.

Her answer: “Mama, you know I’ve been going to Charleston all my life. They know me there. They know all about me. Why go anywhere else?”

It was settled.

Steel Magnolias

KC would graduate from high school on a Friday and faced surgery by pediatric cardiac surgeon Scott Bradley, M.D., the following Monday. Her heart was greatly enlarged, so she had to have surgery to streamline her blood flow and reduce the size of her heart. She also needed an ablation and a pacemaker. 

“She had like an overhaul done, I’d call it. That was her last open-heart surgery,” says her mom. KC did well and relies almost totally on the pacemaker for her heart’s functioning. 

She didn’t let it stop her from her dreams. Given all her exposure to the medical field, she decided to become a pharmacy technician at Grove Park Pharmacy in Orangeburg, a group that’s been very supportive of her medical needs. She met a friend of her cousin, Brandon Jackson, and life got even better. 

In March 2011, they married. Brandon says he didn’t know about her health issues at first. “She doesn’t seem like she has any problems. She doesn’t let anything slow her down. I didn’t know about them for the longest of times.”

In the fall, they decided they wanted to have a child. They talked to doctors who cleared it, warning that it might not happen. They tried for a year with no success. KC resigned herself that it wasn’t going to happen. Her mom was secretly relieved. KC was too young to know the storyline of the classic movie “Steel Magnolias,” but her mother knew all too well the life-threatening risks of a pregnancy for her daughter.

Brandon and KC decided to adopt instead. The day they were going to meet the lawyer to sign adoption papers, the birth mom changed her mind, a memory still hard for the couple to recall. “That was hard, and we decided we wouldn’t try that again,” Brandon says. “It was a lot of heartbreak.”

Fertility testing came next, and they were debating options in 2015. A week after they returned from testing, Brandon remembers KC woke him with an unusual early Valentine’s gift. She handed him a stick. “It took me awhile to realize I held a pee stick in my hand. It was an awesome moment.”

They kept it quiet for a long time. Kathy said she was scared to death and also happy for them. “My heart was broken because I was so scared. There were so many risks involved. Sometimes it gets to the point where all you can do is turn it over to God.”

KC, on the other hand, was thrilled. 

“I always wanted to be a mom, and I prayed about it every night. When it finally happened, I just knew that was what God’s plan was. He took me through it. I did very well through my pregnancy. I did better than what they thought I’d do,” she says. 

KC was induced at 37 weeks, and Isaac was born Oct. 1, 2015, by cesarean section. It was during a week of terrible flooding in Charleston, so bad that at one point a doctor had to don swim trunks and flip flops to get in to see them, a story they still enjoy sharing. 

KC had to have a cardiac nurse and a cardiac anesthesiologist as well as the usual labor and delivery team members. While Kathy was pacing, worrying and stepping back to let Brandon take lead, Brandon watched the miracle of his son's birth. 

The staff up there is amazing, he says. “The nurses treat you like they have known you forever. They seem to genuinely care. One of the anesthesiologists had a bedside manner that was really great. He calmed her down.”

KC did develop a hematoma, a localized swelling that is filled with blood, and had to stay in the hospital for eight days. The medical team got her through it, and finally they were able to take Isaac home. KC says being a parent goes far beyond even what she thought it could be. “It’s wonderful. I’ve gotten more patient. I feel very blessed. I feel very protective.”

Brandon agrees. The first time his son got a normal, routine virus, he panicked. All of a sudden, he had a newfound appreciation for his mother-in-law.

“I have two strong, amazing women sitting next to me. Having Kathy here is amazing. She puts my mind at ease. Most son-in-laws and mother-in laws don’t get along so well, but we’re a tight-knit group.”

Kathy, who admits she used to worry a lot, says she’s just glad to be able to celebrate the moments. She considers many at MUSC as family. “I have seen medical technology grow with my own eyes, and how blessed we are to have such a fine medical facility right here in our own backyard. Words cannot possibly express how thankful I am for the efforts of MUSC over the past 32 years. What brilliant and – most importantly – caring people we have watching over us.”

She has been richly blessed, she says.

“The first five years, I wasted a lot of time in worry. I really did. I wish I could go back and get those five years. It taught me a valuable lesson, and I’ve had a lot more years that I didn’t waste. Now I worry when it’s time to worry - when something’s wrong. Otherwise, I thank God for the blessings.”