She was taken to Children’s Hospital in Minneapolis, where the life-threatening heart condition was diagnosed. Her heart was so enlarged it filled her chest cavity, collapsing one of her lungs.
Dearani at Mayo performed the transplant. A donor heart was found within 18 hours; it came from a 10-month-old child in South Carolina.
Doctors discovered Sydney’s heart defect during a routine screening when she was 2½.
Later, in the spring of 2012, a bout with a common illness triggered cardiac arrest twice in four days. Medical staff performed CPR both times, once for 18 minutes and once for 28 minutes. Sydney suffered brain damage and developmental delays.
Two weeks after the cardiac arrests, Dearani performed Sydney’s transplant. Her heart came from a 2-year-old in Texas.
The Rippys have never met the donor families but Linsey Rippy writes them letters that go through a national clearinghouse.
“I tell them thank you. It sounds so stupid and inadequate but what else can I say?” Linsey Rippy said. “I say, ‘We treasure the gift you gave us and we take care of it.’ ”
Both girls takes a series of drugs each day so their bodies don’t reject their new hearts. They see a roster of specialists. They go to Mayo for a whirlwind of appointments. Afterward, Linsey Rippy said. the family has a “Mayo hangover.”
Time for school
Madison will be in first grade this fall. Her first day of kindergarten was more stressful on grandmother Joan Lofboom than mom.
“I followed the school bus to school,” Lofboom confessed. “I am a very worried grandma.”
Both girls are in the school district’s special education program because of the brain damage they suffered. The hope is that the girls will achieve normal to near-normal intelligence.
“[The doctors] are very hopeful that their brains will reroute around the areas of damage,” Linsey Rippy said.
Between doctor’s appointments, the girls have a relatively normal life. They swim with grandma and learn about tools with grandpa.
“Some kids baby their dolls. My kids doctor their dolls,” said Linsey Rippy.
The dramatic before-and-after is one of the most gratifying parts of his job, said Dearani
“Before surgery usually the disability is so severe, their quality of life is terrible. After the transplant, it is dramatically different. It is like night and day. They go from being able to do nothing to being able to do most anything,” Dearani said. “In children, it is the most spectacular. It’s baseball, soccer, going to school, playing on the chess team, going to a party with friends.”
The medicines and doctor’s appointments are challenging but the life in between can be fulfilling.
“The trade-off is this really great quality of life in between these medical events,” Dearani said.