November 2007

Marla Berggoetz and her four children (from left): Marli, Lily, Jaden and Jordan. (Click to view larger image)

     by K. Aleisha Fetters

     When Marla Berggoetz, 43, returns home from a brief vacation, she doesn't load the washing machine or scrub the counters. She plops on the couch with her husband, Brad, 42, and their four children. They order a pizza, pop in a movie and cuddle up on the couch.

     And then she cuts off the hospital bracelet from one of her kids' wrists. Her three youngest, Marli, 10; Lily, 7; and Jaden 5, all suffer from hereditary spherocytosis, a genetic disorder of the red blood cells characterized by anemia, jaundice and enlargement of the spleen. In the United States, about one in 5,000 people suffers from the condition.

     With Berggoetz and her husband each having the recessive gene for the disease, their children each had a 25 percent chance of developing it. "We should play the lottery," Berggoetz says with a laugh.

     Recently, all three have had their spleens removed, cutting down their trips to the hospital for blood transfusions. But the surgery also has cut down their immune systems.

     "Most parents - especially after having many kids - don't worry too much when their kids get a cough," Berggoetz says. "I have to."

     The three take penicillin daily to help prevent serious infections, and if their temperature hits 101.5 degrees, they are off to the doctor. "You can't wait," explains Berggoetz, who is examining Lily's pink eye while the 7-year-old picks the mint leaves out of her mom's water. "Ew," Marli says. Berggoetz laughs.

     While neither she nor her husband has the disease, their burden is still huge. Brad Berggoetz works at UPS to maintain much-needed health insurance for their children while his wife works two part-time jobs as a sign language interpreter. She coordinates her schedule around her children's coughs, bellyaches and routine blood tests. When Marli stayed at Riley Hospital for Children, Berggoetz worked at IUPUI so she could jog over to see her daughter after interpreting a quick lesson here and there.

     Berggoetz still remembers watching nurses struggle to find a vein in Marli's dehydrated arm during one hospital stay. Marli cried and her mother cried out to God.

     "You split the Red Sea," Berggoetz recalls saying. "Why can't you make them find a vein and make my daughter stop crying?"

     Berggoetz's journey of faith has always drawn her and her husband together. When they were dating, they taught a Bible study together. "We were a great team," she says.

     The three children's illness also has had an effect on the one who doesn't have it. Jordan, 14, suffers from anxiety after growing up with three perpetually sick siblings.

     Taking care of their three children with hereditary spherocytosis and one with an anxiety disorder, the Berggoettzes have learned to be an even closer duo, whether that is playing tag-team at the hospital or practicing tae kwon do in their living room.

     Each year, the couple travels to the spot at Lake Griffey in Bloomington where Brad proposed almost two decades ago. So even if Marla has "dropped a sense of normalcy" on most days, she is happy for a moment of serenity every now and then.

Article appears as published in the IW November 2007 issue.