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.”
At age 2½, Madison developed a paralysis on one side of her body. She was rushed to Mercy Hospital in Coon Rapids. Doctors determined that she was having a series of strokes, which caused brain damage and some developmental disabilities.
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.
For the parents, the worry extends beyond the girls’ health. Medical costs easily exceed $1 million a year for each. Noel Rippy works full-time in remodeling and construction, but the family relies on the state’s MinnesotaCare health care plan to cover the girls’ medical care. The family pays a $200 monthly premium for the insurance, which is tied to families’ income.
The Rippys still have plenty of out-of-pocket expenses, including the frequent trips to Mayo.
Linsey Rippy doesn’t work outside the home. Dealing with appointments and insurance and caring for the girls fills her days.
The medical costs influence nearly every daily decision the family makes — where they live, what they buy, what they do.
She’s become more politically active. She’s a supporter of President Obama and is passionate about Obamacare, which eliminated lifetime maximums on health care costs and allows people with pre-existing conditions to buy insurance. She wrote a thank-you letter to Obama, and he wrote back.
“I said, ‘Thank you for caring for kids like mine,’ ” Linsey Rippy said. “I adore the man.”
Linsey Rippy is upbeat and matter-of-fact when she talks about the girls’ medical history, rattling off medical jargon and then explaining it in lay terms.
She acknowledges that she takes an antidepressant to dull the anxiety that sometimes plagues her.
Her life is forever changed. She can’t imagine going back to work. Her needs and their marriage will always take a back seat to the girls’ care.
Mayo staff often have her talk to other transplant families. She also networks with transplant survivors for support and advice.
“I talk to a lot of adult survivors. The biggest advice they have is, ‘Your daughters have been through hell but they shouldn’t act entitled because of it.’ I try to give them as normal a life as possible.”
The Rippy family raises money and hosts toy drives and blood drives. They make fleece blankets and goody bags for other young heart patients. And she tries to teach her daughters to be strong.
“I tell Madison, ‘There’s no crying in baseball.’ I want her to own that strength with what she has gone through.”
The family is hoping to take a trip to Disney World this year through the Make-A-Wish Foundation. Their application is pending.
“It strikes you we are doing this. We are surviving,” Linsey Rippy said. “We are not just living life, we are enjoying it.”