Anna Kozak, 4, of Irvona passes a tea set cup back and forth across the table, laughing harder each time the cup is slid back to her for her to pass to her playmate. Her huge smile and laughter grows into a shriek of excitement as the game continues for several minutes.
Her older sister Grace and younger sister Claire sit by watching their sister cheerfully playing at the table.
“All Anna wants to do everyday is play catch,” Grace says laughing.
The scene is not one the Kozak’s would have believed possible four years ago before Anna’s life was saved by the doctors and staff of Janet Weis Children’s Hospital at Geisinger.
It was early morning of Aug. 29, 2007. Rick and Kimmie Kozak were at a local hospital awaiting the birth of their second child.
Expectations were high and the couple was excited about a new addition to their family. However, Anna’s journey would be a difficult one.
When Anna was born, she was not responding or breathing. The situation was overwhelming for the Kozaks and the doctors knew things weren’t exactly as they should be.
“The doctors had to give her oxygen and get her stabilized,” Kimmie said. “It took a long time for even Rick to be able to see her because they were trying to figure out what was wrong.”
After they stabilized Anna, the doctors suspected there might be something wrong with her heart.
“Our doctor said she looked like she had Down Syndrome and right away began to check her heart,” Kimmie said.
Doctors at Clearfield Hospital performed an echocardiogram and electronically sent the data to Janet Weis Children’s Hospital at Geisinger. The results showed that Anna had several heart defects, the most serious being an atrioventricular canal defect, which is a large hole in the center of the heart that exists where the upper and lower chambers join.
Anna was transported to Geisinger and spent 12 days in the Neonatal Intensive Care Unit. There it was confirmed that Anna indeed had Down Syndrome and she would need surgery on her heart.
“Anna’s defects are pretty rare, found in two out of 10,000 babies,” said pediatric cardiologist Fareed Ahmad, M.D.. “It is not uncommon in Down Syndrome patients. It is a complex heart defect but it is treatable. Those who aren’t treated die in the first couple years of life.”
Doctors stabilized Anna and put her on medications before sending her home.
“The doctors wanted to let her grow bigger before they fixed her heart,” Kimmie said.
Unfortunately, that did not work out well for Anna. Anna was in and out of the hospital several times for high fevers and difficulty breathing. During a Nov. 2 trip to State College to pick up medications, Anna developed a high fever and became very ill.
“I called our doctor in Clearfield to say we were on our way,” Kimmie said. “They were ready for her in the emergency room, but could not get too much established, other than she had fever.”
Anna again was sent to Janet Weis Children’s Hospital at Geisinger. This time she stayed for three months, spending her first Thanksgiving, Christmas and New Year’s in the hospital.
“They found that she had a virus called parainfluenza and with the heart condition, it was really making things more complicated,” Kimmie said. “It was hard enough with her having two large holes in her heart; she really couldn’t fight it anymore. She ended up on a ventilator for more than a month, before she was able to have surgery.”
Usually doctors try to wait until the child is between 2 to 6 months to operate, but because Anna developed congestive heart failure rather early, waiting was no longer an option. On Dec. 13, doctors felt Anna was stable enough for surgery.
“They pretty much knew it was now or never, because she was not getting any better,” Kimmie said. “They got her to a point where they felt like she was as strong as she could be for surgery without losing any more time.”
Doctors had difficulty weaning Anna off of the ventilator and when they finally were able to remove it, her stay was prolonged because she wasn’t eating.
“She had really bad acid reflux,” Kimmie said. “Also, right before her surgery, we found out that she had hypothyroidism. So all these things were working against her.”
Hypothyroidism screening has been around since the 1970s, according to Mushtaq Godil, M.D., Associate in Pediatric Endocrinology at Janet Weis Children’s Hospital.
“Anna was not diagnosed until the age of three or four months when she was admitted for surgery,” Dr. Godil said. “We started her on thyroid medicine and since then she has been doing very well.”
In January, Anna had a laparoscopic gastric procedure to relieve some of her symptoms and was given a feeding tube, which she kept until August of that year.
“She would not take anything orally,” Kimmie said. “We had to do a lot of work and actually had to get her to a feeding clinic to get her eating.”
In late 2008, Anna developed a complication that was not very common.
“She had some outflow obstruction from the left bottom chamber. The flow had some resistance that gradually got worse,” Dr. Ahmad said. “The leakage that was there on the left side in the left lower chamber called the mitral valve got fairly worse as well.”
When Anna was almost 18 months old, she had a second surgery to repair the two problems. Since then Anna has been thriving.
“Thankfully we just have follow up appointments now,” Kimmie said. “She sees Dr. Ahmad for her heart and Dr. Godil for endochronology in the Pediatric Outreach Office in Altoona.”
Outreach clinics like the one in Altoona provide a great service for Geisinger patients, according to Dr. Godil.
“I see Anna every four months in Altoona,” he said. “The clinics make it so we can provide patient services close to patient’s homes and they don’t have to travel.
The family can’t say enough about the staff at Janet Weis Children’s Hospital.
“Some of the nicest people you would ever meet. I mean all the way from the very head doctor down to the nurses, they were all very nice,” Rick said. “Never made you feel stupid for asking questions or anything like that. They were always very forthright with information, they never held anything back. They were very good to our family.”
Anna is well adjusted and happy. She sits singing into her newly-acquired karaoke machine and gives a playful smile.
“Are you a Miracle Kid?” Kimmie asks her. “Show everyone how pretty you can smile.”
Anna hams it up and gives an ear-to-ear grin. “Cheeeeese!”