Maddie Gettis cooed and clapped as a robotic Mickey Mouse sang and danced. She turns 1 later this month, and if not for the scar on her chest, no one would know she’s had a life far different from a typical baby.
Like one in every 100 babies, Maddie was born with a congenital heart defect. In Maddie's case, the right side of her heart never properly formed, a condition known as tricuspid atresia.
Maddie's family lives on a military base in Pensacola, Fla., where her father, Northport native Eddie Gettis, is a Navy corpsman specializing in family medicine. The tot visited Long Island last weekend to be the “spokesbaby” at a spaghetti dinner and Chinese auction at the Moose Lodge in Greenlawn. The event, which raised about $2,000, was organized to increase awareness and funding for Mend Maddie’s Heart, a nonprofit formed by Maddie’s grandmothers, Lorraine Gettis of Centerport and Cindy Sattal of Springfield, Mass., that works to support families dealing with CHD.
Maddie's condition was discovered when her mom, Lindsay, a registered nurse, was 32 weeks' pregnant. She was attending a class on giving sonograms when her instructor demonstrated some of the methods and equipment on her. The instructor noticed something wasn’t right with the size of Maddie’s heart and contacted Gettis’ doctor.
“When I was pregnant I was told she had a 70 percent chance of making it to 5 years old,” Lindsay Gettis said, adding that Maddie has endured three open-heart surgeries to route blood from the left side of her heart to her lungs.
But the idea for the fund to help Maddie preceded her birth. Before Maddie was born, Lorraine Gettis suggested that her parents harvest blood from the umbilical cord because of ongoing research to grow a new heart using cord blood. The procedure wasn't covered by Eddie Gettis’ military insurance, so Lorraine Gettis and Fattal raised $2,000 to cover it.
The Gettises have also spent money on travel to Children's Healthcare of Atlanta at Egleston, as well as on hotel stays and other necessities. Maddie’s grandmothers realized that CHD families everywhere often need money to cover expenses other than hospital bills. Mend Maddie's Heart was founded to help.
Two weeks ago, Mend Maddie's Heart helped a family in Indiana have their gas turned back on after they were unable to pay their utility bill. The organization has also funded funerals for CHD babies.
The organization’s support is not only financial. Mend Maddie’s Heart is working with lawmakers to pass a bill that would require doctors to test a newborn’s oxygen saturation levels as part of the standard tests that babies receive in the 24 hours after birth. The test will tip off physicians to heart defects not caught in utero.
For Maddie, the fight is far from over. Doctors expect that in her late teens she may develop problems with her liver and kidneys as a result of poor oxygenation during her development. Nevertheless, Lindsay Gettis is determined to enjoy Maddie's childhood.
“I could not ask for a better baby,” she said. “She’s so happy. So, so happy.”
For more information, visit mendmaddiesheart.com.