After retiring from a storied career in corporate communications and marketing, Fran was looking to give back in her community. Having spent much of her adult life in Orange County, she was aware of the impact CHOC has had on the place she has called home for decades.
“When I was exploring volunteer opportunities at CHOC, I knew that I wanted a position where I could engage with patients,” Fran recalls. “When volunteer services described all that the Family Resource Center offers to patients and families, I knew it was the perfect place for me.”
Today, Fran staffs the Family Resource Center (FRC) located on the second floor of the Bill Holmes Tower. The FRC is a space where patients and families can read books and choose one to take home, rent movies, play games, utilize a computer lab, research their child’s diagnosis with medical and developmental literature, and decompress with arts and crafts.
Through her weekly shifts and as host of the FRC’s weekly Story Time, which is broadcast to all patient rooms within CHOC’s Orange campus, Fran has formed a special bond with 12-year-old patient Evelyn, who has been a CHOC patient for nearly her entire life.
Before she was born, Evelyn was diagnosed with complex congenital heart disease. Her heart defect is commonly associated with Trisomy 21 (more commonly known as Down syndrome). Two valves within Evelyn’s heart― the mitral and tricuspid valves― as well as the walls separating the heart chambers, did not develop correctly, which caused the right side of her heart to be underdeveloped and non-functional. Unfortunately, this condition can’t be “fixed,” only managed. This is typically done through three surgeries: the BT or Central Shunt, normally in the first days of life; the Bidirectional Glenn, usually between 3 and 9 months of age; and the Fontan, usually between 2 and 5 years.
In a typical heart, the right side of the heart pumps deoxygenated blood to the lungs, and the left side pumps oxygenated blood to the body. Because Evelyn’s right heart is too small to carry out its normal function, Evelyn has what’s referred to as single ventricle physiology. The purpose of the surgeries is to re-route the vessels around the heart so the one functional chamber pumps oxygenated blood to the body, and the deoxygenated blood bypasses the heart and passively drains back to the lungs.
Evelyn underwent her Central Shunt procedure at two months old to establish reliable blood flow to her lungs. Her Glenn procedure took place just after her first birthday to route the blood flow from the upper part of her body to her lungs. Her third heart surgery, the Fontan, took place when she was seven years old to re-route the remaining blood flow to her lungs. All three surgeries were performed by Dr. Richard Gates, director of cardiothoracic surgery at CHOC, co-medical director of the CHOC Heart Institute, and CHOC’s surgeon-in-chief.
In addition to check-ups for her heart every few months with pediatric cardiologist Dr. Pierangelo Renella. Evelyn makes visits to CHOC weekly for platelet transfusions. Along with her heart conditions, she was also diagnosed with idiopathic thrombocytopenic purpura (ITP), meaning she has low levels of platelets, a part of the blood that prevents bleeding.
Spending so much time in and out of the hospital and shuffling between doctor’s appointments could easily make a child scared of going to the doctor. That’s not the case with Evelyn.
“Everyone we’ve encountered at CHOC has been very kind to us. All CHOC staff is very patient with her and takes a lot of time with her,” says Evelyn’s mom Rosa. “I’m very thankful because thanks to CHOC, Evelyn is doing well.”
No matter the reason they’re visiting CHOC, Evelyn and Rosa always make a point to stop by the FRC, especially on days that Fran is volunteering.
“It makes me sad that patients are here long enough or often enough to get to know their names,” Fran says. “But I’m happy we get to offer them a distraction and sense of normalcy.”
Even though Evelyn doesn’t love reading, she loves being read to―especially by Fran. In addition to arriving early enough for appointments to make Fran’s Story Time, Evelyn loves playing blocks with her friend Fran as well.
“She feels right at home here in the FRC,” says Rosa. “Fran is very sweet to Evelyn and I appreciate everything she does for my daughter.
The admiration goes both ways.
“Evelyn is always so upbeat. Her energy is infectious. I sometimes feel that I get more out of volunteering than I give,” Fran says.
Being a bright spot in a patient’s day is what keeps Fran so connected to her role as a volunteer.
“If you can make a little one smile, then you’re doing something good.”
For more about CHOC’s Heart Institute