The Spice of Life
“Crème brulée!” cheers Raeann Reinhardt, age 10, when asked about her all-time favorite thing to eat. The fifth-grader is a foodie who enjoys cooking French cuisine and other delicacies with her parents, Mark and Allison, along with her younger sister, Riley. Last year, “RaeRae” as she is called, dedicated her entire fourth-grade report at Curie Elementary on her culinary idol, Julia Child.
It’s been said a way to a man’s heart is through his stomach. The same can be said for RaeRae, who has developed a sophisticated palate for such a young child. The feisty gastronome can seriously dish about her favorite dishes.
Her parents call RaeRae an “old soul” and just as fiery as the flaming custard dessert she cherishes. What kid noshes on calamari? RaeRae does. She’s a regular customer at Lorna’s Italian Kitchen in University City. In fact, RaeRae is so well-liked at Lorna’s that when she was hospitalized at Rady Children’s last year, the owner delivered three night’s worth of pizzas and side dishes.
You see, hospitals and hospitality have been the two main ingredients in RaeRae’s life. When she was just 10 days old, she underwent a biopsy that confirmed the newborn’s diagnosis of biliary atresia, a rare liver disease that often results in a liver transplant.
“RaeAnn has a very complicated medical history,” says Dr. Ranjan Dohil, a pediatric gastroenterologist at Rady Children’s, who has followed her condition since birth. In addition to her biliary atresia, she also suffered from a host of congenital defects affecting her heart, spleen and abdominal organs.
At 4-weeks-old, RaeRae had the Kasai procedure performed, which failed to alleviate her liver problems. Soon thereafter, at age 4 months, she underwent not one, but two liver transplants. In fact, her father, Mark, donated a portion of his liver for the second transplant, called a living-related split liver. She weighed only 11 pounds at the time.
A tender heart.
The surgeries would continue. When RaeRae was 2 ½ years old, she underwent open-heart surgery. Dr. Jolene Kriett of Rady Children’s performed the surgery, which involved removal of the subaortic membrane and some heart muscle in the area below the aortic valve.
For now, RaeRae is followed with a cardiac echocardiogram every six months to check on her heart condition, which has remained stable for the last seven years, says Dr. Kriett.
“If you’ve seen her running around, you would never guess she had a heart problem,” remarks Dr. Kriett.
Despite the detour with her open-heart surgery, RaeRae was already a patient at Rady Children’s every six to eight weeks to have her biliary drain replaced. Each visit required general anesthesia and a three-day hospital stay. During this stage of her treatment, RaeRae was prevented from swimming, as she had open tubes in her abdominal area – a quick onramp for possible infection. When RaeRae turned four, the tubes were finally closed.
It’s fitting that RaeRae views Julia Child as her hero. Despite the fifth-grader’s diminutive size, her poise and presence is equal if not larger than Child’s stature at six feet, two inches. RaeRae now takes a daily growth hormone to assist with development. This is just one of seven medications she takes daily.
Another anomaly found at birth, situs inversus, revealed RaeRae’s abdominal organs were in the opposite direction of where they should be. With one of the latest advancements in medical imaging, Dr. Gohil was able to take an insider look at the root cause of her bleeding when she had a capsular endoscopy performed at age six. This involved swallowing a large pill that is actually a micro-sized camera, taking rapid photos of her internal organs. RaeRae was the first patient at Rady Children’s to undergo such a procedure.
“Overall, she has done extremely well,” Dr. Dohil says about his record-breaking patient. “She is very intelligent, and her parents do an amazing job.”
Thumbing through the photo albums of RaeRae’s early years, it is evident that this family simply takes their routine wherever they go, be it home or hospital. In one photo, mom Allison is blow drying RaeRae’s hair while she lays in recovery following her open heart surgery.
“She’s a miracle,” says Allison about her daughter’s medical mystery and survival. “She really battles challenges partly through an inner strength that comes from a love and knack for making people smile.”
Yet, through the supporting smiles and united parental front, both Mark and Allison fear for what’s out there lately, namely the H1N1 virus, commonly referred to as the Swine Flu. Her parents vigilantly monitor RaeRae’s condition, since her immunity is already suppressed given her surgeries and daily medications.
“Despite the various levels of adversity she has faced,” Mark explains, “she has always triumphed. To me, triumphs are a choice.”
In the Reinhardt household, each day is a celebration of life, with a pinch of optimism and extra cups of “faith, prayer, God, and perhaps a bit of Irish luck,” according to Mark. This is a recipe of a family who many times throws the pasta to the wall and sees if it sticks … and on most days, it does.
Julia Child would cheer to that.
By Colleen McNatt
Kids' NewsDay 2009