The parents of Madison and Sydney Rippy cherish each day with their girls. But there’s anxiety and worry about the future health and finances of raising two disabled children.
Sisters Madison, 7, left, and Sydney Rippy, 4, played at their home in Blaine last week. Both girls had heart transplants when they were 3 years old after being diagnosed with a rare condition that impedes the heart’s ability to pump blood efficiently.
They call them heart days.
They’re as celebrated as birthdays in the Rippy Family.
It’s been a little more than a year since 4-year-old Sydney Rippy got her new heart on April 25, 2012. Her big sister, 7-year-old Madison, got her new heart on Aug. 7, 2009.
Both sisters were diagnosed with dilated cardiomyopathy, a rare condition that impedes the heart’s ability to pump blood efficiently. It can cause sudden cardiac death.
Mayo Clinic surgeons performed heart transplants on the girls, saving their lives. It’s extremely rare for two children from the same family to need heart transplants.
The blond-haired, blue-eyed sisters with matching ponytails bounced around their Blaine living room, smiling and giggling, one day last week.
As they played, the picture of childhood energy, mother Linsey Rippy talked about life with two transplant kids. It’s overflowing with happy, grateful moments, but it’s also one of worry, medical bills, developmental disabilities, dreams deferred and guilt.
Linsey and Noel Rippy are upbeat and affectionate with their daughters. The girls love construction and building. It’s Dad who likes to handle the occasional girls’ night with them, complete with nail painting and hairstyling. The Rippys spend time each week with grandparents, aunts and uncles. Linsey is home full-time caring for them, managing their schedule of medicine, doctor’s appointments and therapy.
“They live fantastic lives, but it will never be fixed. It will never be cured. They are strong, independent and fun but they will always be transplant kids.” Linsey Rippy said.
“A lot of people think it’s fixed and done,” Linsey Rippy said.
Some childhood transplant recipients require a second heart transplant after 10 to 15 years, confirmed their Mayo surgeon.
The anti-rejection drugs are hard on kidneys, raising the prospect that the girls will someday need a transplant of that organ, and suppressed immune systems raise other risks, the mom said.
For her and Noel, there are extreme highs and lows. There’s unabashed, giddy joy about having another day with their children. But there’s anxiety and worry about the future and the finances of raising two disabled children.
“It’s devastating financially. It’s devastating emotionally. It will bankrupt you in a heartbeat, pardon the pun,” Linsey Rippy said.
“It’s a very special family,” said Dr. Joseph Dearani, who performed both of the heart transplants at Mayo Clinic. “They are the poster family for coping with a real medical challenge. They are doing it incredibly well. They are very upbeat. They have a very positive outlook on things. This is one of the reasons these little girls have shined and done so well. For this family, the glass is half full.”
No family history
There’s no history of heart defects in the family. Genetic testing has turned up no leads. The couple experienced normal pregnancies. Linsey was conscientious about diet and exercise and she avoided alcohol, smoking and drugs. Still, she wonders sometimes.
“Did I do something when I was pregnant?” she asks. “That is something that crosses all of us heart parents’ minds.”