Mikayla Horvath of Cresco has a smile that can melt a person's heart. On top of that, she has an amazing, outgoing personality. According to her mother, Marella, she is a real "girly girl."
"She changes five times a day into different outfits," Marella said.
"She always wants make-up," says her older sister Isabella, 10. "She likes to dress up like a princess."
While Mikayla has the heart of a true princess, it was her heart that created issues for her and put her into a life-threatening situation the moment she was born.
At her fourth-month prenatal visit at Geisinger Medical Center in Danville, Marella Horvath found out the sex of her new baby but also learned that there was something very wrong with her baby's heart.
"Mikayla had an interrupted aortic arch, meaning the main artery coming out of her heart and feeding blood to her body actually ended part way around her heart," said Robert Mangano, M.D., Director of Pediatric Cardiology at Geisinger Janet Weis Children's Hospital. "She also had an underdeveloped right ventricle. Usually you have a right and left ventricle which are about the same size. She had a left ventricle but her right ventricle was tiny. She really only had one functional pumping chamber. Those two defects combined added up to be a very life-threatening heart defect."
The Horvaths were shocked, having had three healthy children before Mikayla.
"It was a lot to take in," Marella said. "I went home and looked everything up on the Internet, which was the worst thing to do. We had five long months to worry and read up on everything. We are lucky that they found it, because babies born with what she has, only live for a week after they are born. There were quite a few stories on the internet, where they didn't find out and they took their baby home and started noticing that something wasn't right. It was too late. All I did was cry and worry about the unknown."
"We had a lot of worries and a lot of meetings," Mikayla's father Jim added. "The hospital and the doctors were great. We had a big meeting with all the doctors and they explained everything to us and walked us through all the processes."
Ultrasounds were done on Marella regularly to monitor Mikayla's defects and to plan for her to be delivered in a very controlled fashion.
"That was very important because her heart condition was going to cause her to become unstable pretty quickly after birth if we didn't take care of it immediately," Dr. Mangano said.
On June 20, 2007, Mikayla was born and was immediately taken by the expert staff in the Geisinger Janet Weis Children's Hospital Neonatal Intensive Care Unit.
"We called it the McDonald's delivery, because we were in one room and there was a sliding glass window that she was passed through to waiting NICU doctors and nurses on the other side," Jim said with a laugh.
Mikayla was immediately given medicine intravenously to maintain a blood vessel that every human fetus has that connects the aorta and the pulmonary artery. Normally this blood vessel closes shortly after birth, but with the medication, doctors were able to keep it open and stabilize her until arrangements could be made for surgery.
Mikayla had her first surgery when she was one-week old. According to Dr. Mangano, the surgery was a very complicated procedure. It consisted of connecting an artery that pumped blood to the body and lung artery together to make a new, good-sized body artery. In addition, the interrupted parts of the aorta needed to be connected. And lastly, an artificial tube, or shunt, needed to be placed to connect the body artery to the lungs and control the amount of blood flowing into her lungs, a procedure known as the Norwood Operation.
"It was roughly 12 to 14 hours of surgery and she was only given a 50-50 chance of surviving," Jim said.
"Don't know how we survived that, but we did," Marella said. "We were dealing with a lot at the time. My mother was sick with cancer when Mikayla was born. Mikayla was a trooper. She made everybody else get through it. She needed us and she was such a fighter. Even as a baby, she was such an inspiration to everybody."
Not long after the initial surgery, Mikayla was having trouble eating and was diagnosed with acid reflux. The NICU doctors decided in order to help her recover and get healthy that she should be given a feeding tube, or G-tube, for proper nourishment. Mikayla kept that feeding tube until she was three years old.
"We spent about 2 months in the NICU and about a month in the PICU for the feeding tube," Marella said. "We can't say enough about the Ronald McDonald House of Danville®. Jim and I took turns staying with her and the other would stay at the Ronnie House. It was our second home, and everyone was so supportive."
The family had very little time to relax before Mikayla's next procedure. At six months of age, Mikayla was scheduled for her second open-heart surgery. The first surgery was only a temporary fix for her condition, according to Dr. Mangano.
"The second operation consisted of removing the shunt and connecting her upper body vein to her lungs," he said.
Marella's mom passed away the day before Mikayla's surgery.
"My mother passed away on Dec. 17. We had to leave her bedside to go for Mikayla's procedure. We ended up getting the call the night before the surgery telling us she passed away," Marella said with tears welling in her eyes. "They say God doesn't give you anything you can't handle, but I don't know how we handled all that. It was definitely through a divine nature and lots of support from everyone. We always said my mom was like a guardian angel watching over her."
The second surgery gave Mikayla more time to grow and get stronger. At two years of age Mikayla had her final open-heart surgery, which involved connecting the lower body vein to the lungs in a procedure called the Fontan Operation.
The Fontan Operation is a procedure designed to treat single ventricle children. Most people have two pumping chambers, one pumping oxygen-deprived blood to the lungs and the other pumping oxygen-rich blood to the body. In Mikayla's case she had only one functional ventricle that she needed to pump blood to her body.
"In the Fontan procedure, we take the oxygen-deprived blood and bypass the heart. We allow the oxygen-deprived blood coming back in from the veins to empty directly into the lung arteries. Once it goes to the lungs it picks up oxygen and back to the heart that pumps it out to your body," Dr. Mangano explained. "It is not a complete cure. Her circulation is different from the rest of us, but for Mikayla it is working quite well."
Part of the Fontan Operation, requires the surgeon to make a connection from the veins into the heart to allow some of the oxygen-deprived blood into the heart. This is done to help a child get through that operation a little easier.
"If you don't do that, they can have a lot of troubles and a hard time recovering," Dr. Mangano said. "With this they recover more easily. It isn't meant to stay forever. A little later, we brought Mikayla to the heart catheterization lab and closed the hole that we made and she didn't have any more mixing of blood."
Through it all the Horvath family pulled together to help Mikayla through her procedures.
"We had a lot of family help out, especially my aunt and sister, and our three kids helped a lot," Marella said. "They were forced to grow up fast. Adam (now 8) was too young but, they were able to do stuff around the house to help out so Jim and I could be with her. They know how to do the dishes and the cleaning, washing clothes and the sweeping. I told Tyler (now 14) it was training for him when he gets married."
Jim was working in Delaware at the time of Mikayla's second surgery and with the passing of her mother, Marella needed all the help she could get.
"My Aunt Care stayed with us, interrupting her life for months, to help out with Mikayla and the kids," Marella said. "She was my mother's sister and it felt like my mom was still with us when she was around. Jim and I can't thank her enough.
"My kids… I don't know what I would have done without them. They would come home and help out. They gave Mikayla so much love," she said. "I remember Isabella sitting on the chair contantly holding her, Tyler helping with the feeding tube and Adam showering kisses on her. They all wanted their turn.
Mikayla is now in first grade, thriving, and having no trouble keeping up with her three siblings and the kids in school.
"She is good with her height and weight for her age and she is active," Marella said. " She actually just started cheerleading. If you get to know her and her personality, you can't believe she went through, unless you see her scars."
Dr. Mangano finds it very rewarding to see a child, who was in such a dire situation, thriving today.
"She is a beautiful little girl with no trouble whatsoever," he said. "Mikayla needed advanced cardiac care to get her through everything that was provided by donations to Children's Miracle Network at Geisinger. This included advanced cardiac imaging testing such as echocardiograms and MRI's, and both diagnostic and interventional Cardiac Catheterizations. For example, at her last catheterization, we inserted a special device through a catheter to close the hole in her heart that was intentionally left at the last surgery."
Through it all Marella and Jim are very thankful to have their daughter healthy and thriving and cannot praise the staff at Geisinger Janet Weis Children's Hospital enough for saving their daughter.
"They made us comfortable. The nurse, no matter how busy, they made us feel special," Marella said. "They made us feel like Mikayla was the only one they were taking care of. They went above and beyond what they had to do. We cannot express enough thanks for their generosity, dedication and love.
"We are very blessed and very lucky. Mikayla is one of the lucky ones," she added. "Every day, we count our blessings, and we take one day at a time."