Kajsa battles hypoplastic left heart syndrome
When Kajsa was born the week before Christmas in 2002, her parents, Paul and Kristin, rejoiced in their early holiday present. A few hours after her birth, though, hospital technicians detected what they thought was a heart murmur. A subsequent echocardiogram revealed a serious heart defect called hypoplastic left heart syndrome (HLHS). Within hours, Kajsa was transported to Children's Memorial Hospital, where she was evaluated, stabilized, and two days later underwent the first of three reconstructive surgeries.
So began a series of challenges that Kajsa and her family have faced – challenges they have met with courage, determination and faith in the quality of care they've received from Children's Memorial's doctors, nurses and staff.
Immediately following her operation, which was performed by surgeons Constantine Mavroudis, MD, the Willis J. Potts Professor of Surgery, and Carl Backer, MD , the A.C. Buehler Professor of Surgery, Kajsa's chest was so swollen it couldn't be closed. But on Christmas Day, doctors were finally able to close it. Paul says even the little victories were a cause for celebration given the new reality they were facing. The family truly felt the Christmas spirit when one of Kajsa's nurses presented the family with a wreath made out of paper, decorated with Kajsa's tiny handprints. “She also wrote a note to us from Kajsa,” says Paul, who adds that the family was tremendously moved by those gestures.
“The staff was so thoughtful, and had so much care for the rest of the family,” says Kajsa's father, Paul. “That was really inspiring.”
Kajsa was in the hospital's intensive care unit for nine weeks, and was released in early February. The family, including sister Annika and brother Colin, quickly became very familiar with the hospital and its staff, as they were at Children's Memorial virtually every day. Paul says the other children made full use of the hospital's Family Services programs. Child Life specialists even explained in very simple terms to her brother and sister about the procedures Kajsa was going through. Annika and Colin also spent quite a bit of time in the Janice and Kimberly Brown Family Life Center on the hospital's fifth floor, a respite area for patients and family members that is equipped with toys, games and computers.
“The staff was so thoughtful, and had so much care for the rest of the family,” says Paul. “That was really inspiring.”
While the holidays are not the best time for any child to be hospitalized, kids at Children's Memorial can find comfort in the decorations, toys and other gifts donated by individuals and organizations that support the hospital and its patients throughout the year. Paul says his family even received gifts from other families whose children were being treated in the hospital.
“The friendships you form with other parents are incredible,” he says, adding that they've also kept in touch with a number of the nurses who cared for Kajsa.
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Kajsa's most recent surgery was in June, and she faces at least one more. “We're prepared for a lifelong process of care because of her condition,” says Paul. “But she's a feisty, normal, happy toddler, and we celebrate each day with our miracle girl!”
Children's Memorial Hospital seeks philanthropic funding to enhance its programs and services. As a proud partner of the Children's Miracle Network (CMN), all funds raised in the Chicago area through CMN also benefit Children's Memorial. To find out how your support can help the hospital better serve children and families, please contact the Children's Memorial Foundation at 773.880.4237 or Foundation@childrensmemorial.org.