By Michelle Howe For ten year old Addison Gralund, life has been anything but average or normal. But to look at her blond haired, dimply smile you would never know it. Born on January 24, 2007 with a congenital heart defect called Truncus Arteriosus, Addie’s heart had one large artery instead of two separate arteries carrying blood to her lungs and the rest of her body. The disorder occurs in approximately one out of every 33,000 births in the United States. Addison’s in particular accounts for about one in 200 congenital heart defects.
“We did not know she had CHD (congenital heart defect) until she was born,” mom Kris explains. “The doctors and nurses listened to her all night in the nursery and we were informed the morning after her birth.” Needless to say, after having a C section, this was devastating news to hear. The doctor reviewed her testing the next morning and explained she would need open heart surgery within the first month of her life. “We left the hospital with our new baby girl and the doctors said try to get her to a month and try to get her to at least maintain her weight. She would thrive best if we could get her to a month before she had surgery.”
It was quite a challenging month for the Gralunds. “I slept in a rocking chair with her most of her first month of life,” says Kris. “It was the middle of winter, so we couldn’t go anywhere and we couldn’t let many visitors in the house for fear of spreading germs and getting her sick before surgery. Addie had issues sucking the bottle, breathing, and eating and would throw up very easily. She wasn’t getting enough calories and was losing weight so we had to fortify her formula. “The recommended surgeon was in Rochester at the Mayo Clinic, so at the end of February Kris, her husband Ben and older sister Hannah packed up the car and headed north.
Addie had her first open heart surgery a few days later. Her chest was left open for three days to allow the swelling to subside before closing her chest. She had a homograph in put in her heart to create the fourth valve and stents placed in her pulmonary arteries. Her chest was closed in her Cardiac ICU room where she remained until we were discharged 15 days after being admitted.
After surgery was “very scary,” Kris says. “We had to learn how to scoop her up and hold her, without picking her up under her arms.” The doctors explained that she would need additional surgeries as Addie grew. The pieces in her heart weren’t her own cells so they wouldn’t grow with her. She would need larger valves to be placed in the future. Her second surgery would come sooner than we were prepared for - we didn’t expect to have the next surgery until she was about two. However, during a routine echo, it was determined that the homograph wasn’t working like it should, so at seven months, Addie had her second surgery.
When Addie was 2 ½, Addie had her third open heart surgery. Because Addie was older and her heart was a little bigger, doctors were able to use a bovine valve and adjustable stents were used in her pulmonary arteries. Adjustable stents were used this time so that if she had narrowing in her arteries, they would be able to adjust the stents instead of having to do an open heart surgery. This valve lasted almost eight years.
Then in July 2016, while on vacation in Jackson Hole, WY, Addie had a difficult time breathing. The high altitude in the mountains was causing Addie to pass out. Kris had a hunch she would need surgery in the near future. In the months leading up to her latest surgery, Addie’s heart became very loud and she was restricted from all physical activities. Usually a very active girl, playing club softball and volleyball, Addie was frustrated. The restrictions meant no recess, no gym class and no sports activities. She explained to her parents that she felt like her identity had been taken away.
Finally, in March of 2017, Addie had her fourth surgery. It was the tough for the Gralunds because she was now ten and able to ask questions and understand the magnitude of the situation. Addie’s older sister Hannah (age 14) was extremely helpful to all of them while Addie was in the hospital this last time.
Since the last surgery Ben says, “We don’t think about another one unless we are told it’s time to go to Mayo again.” Addie has resumed her normal activities in sports and enjoys playing piano and trumpet. She is a softball pitcher and wears a chest protector when she plays, but otherwise there are no restrictions.
Kris says they have had the support of much family, friends, a pastor and Addie’s favorite nurse – Clint, who has been with them since the first surgery. While they know more procedures will be needed in the future – they are hopeful that her valve can be replaced through less invasive methods with advances in technology.
After attending last year’s Cedar Rapids Heart Ball, Addie is this year’s featured survivor. The Heart Ball is being held on February 24th at the Doubletree. Tickets are available online at https://www.facebook.com/AmericanHeartAssociationIowa/.