TRAVERSE CITY — February marks the 40th anniversary of the American Heart Association advancing heart health awareness and practice. But some, like her 12-week-old Svea Rajala-Leonhardt, are already suffering from heart disease.
Nearly 1 in 100 babies are born with a congenital heart defect, according to Michigan Health & Human Services. Svea was born with Left Heart Hypoplastic Syndrome (HLHS). This is a serious condition commonly referred to as half heart syndrome. According to the University of Michigan CS Mott Children’s Hospital in Ann Arbor, only about 1,000 babies are born with the rare defect each year in the United States.
Svea’s abnormality was discovered when her mother was five months pregnant. Her mother, Linnea Rajara, was due to give birth to Svea in Ann Arbor, but her baby had her own plans.
“She broke my baby shower,” Linnea said. So, on November 21st, when she was 37 weeks old, Svea arrived at Manson Medical Center. Born just over 6 pounds into the world, the little heart warrior embarked on a life-or-death battle and was airlifted to Mott Children’s Hospital Congenital Heart Center, the premier facility for HLHS care.
Svea was two weeks old by the time Linnea was able to hold her baby.
“The first time I picked her up and put her on my chest, I cried,” she said.
The cause of HLHS is unknown, but babies with HLHS may require multiple surgeries during the first year of life. Svea was seven days old when she underwent her first surgery to stabilize her condition.
“It was horrible to see her heart open after surgery,” Linnea said. “You could see her heart beating.”
Svea has grown stronger and returned home to celebrate Christmas with her mother and father, Jason Leonhardt. Just two days after her vacation, an emergency arose and the baby warrior had to be flown back to Ann Arbor for treatment. The procedure she underwent was successful, but Svea is hospitalized due to her intestinal condition.
Svea now has to survive two weeks without breast milk or formula. She will receive nutrition through her veins until the problem is resolved. “In her short life, she rarely ate out of her mouth,” Linnea said.
Baby Warrior will have another surgery this summer so he can survive in a single ventricle.
“I see a very determined and intelligent little person in her,” Jason said. She may not be a perfect marathoner, but I am excited to introduce her to one of my favorite sports, volleyball, and to introduce her to sailing and other sports. I want to share my passion with her.”
Uncertainty and the inability to “spend every waking moment with Svea” were the biggest challenges for engineer Jason.
“The hardest part is feeling helpless as a mother, unable to provide for her, separated from her family and facing the unknown,” Linnea said.
Accountant Linnea works as far away from the hospital as possible. Having used up her acquired leave, she may no longer be able to meet the needs of her employer while she is in Svea’s care. Losing her job and her income is another challenge the couple must face to ensure a strong future for Svea.the family is raising money go fund me.
Search HLHS warrior Svea and follow Svea’s journey on Facebook.
