HLHS Hero: Kelly DiMaggio, Age 25 - Part I

Nov 14, 2014 | Suzanne Ferguson | @suzannerferguson

The Wanek Family Program for HLHS recently had an opportunity to partner with Kelly DiMaggio, a 25 year-old HLHS warrior. That's right...25! We were so inspired by her story and her zest for life that we asked if we could share her story with others, and her answer was, "YES!" We're beyond excited to be sharing part I of her story with you today. Prepare to be inspired.

Looking at Kelly DiMaggio, a beautiful, blonde, rosy-cheeked twenty-five-year old, one would never know she has Hypoplastic Left Heart Syndrome (HLHS). Kelly is one of the pioneers of HLHS, and while she has had some trials and tribulations, her story is full of hope, love and inspiration.

On Nov. 23, 1988, in a hospital in Wisconsin, Sandra and David welcomed a baby girl into the world. The joyful situation drastically changed as the doctors realized Kelly was blue and rushed her immediately to the NICU for testing. She was soon diagnosed with HLHS, and was given a prognosis that she wouldn't have long to live. Kelly was baptized and received her last rites, and then doctors quickly transferred her to Milwaukee Children’s Hospital.

Once told he could visit his daughter, David, drove to the children’s hospital. “I got to hold my daughter, and she had all these tubes hooked up on her,” David remembered as his eyes brimmed with tears. A compassionate nurse and staff brought him up to speed on his daughter’s condition. It wasn’t as bad as they initially feared, and Kelly would be discharged only a few days later.

“She came home the Monday after Thanksgiving, and I was petrified. I remember thinking this child is going to die. I’m not going to get close to her. I mean I loved her, I was just afraid that she was going to die," recalled Sandra.

Only a few months later, Kelly suffered a seizure, and her oxygen saturation levels plummeted, requiring swift intervention. At three months old, Kelly had her first heart surgery, a procedure to increase an opening between the aorta and the pulmonary artery. Her health soon started to improve. Following a schedule set by her doctors, two-year-old Kelly underwent a second heart surgery for the first stage of the Glen procedure. Facing no complications, Kelly had the second stage of the Glen procedure, also known as the Fontan procedure, at four years old.

“[That’s when] we almost lost her,” said David. “When they took her off of the heart and lung machine and her heart didn’t start back up, and they came out and said Houston we have a problem here.” After a tense period of time, the doctor informed the family that Kelly’s little heart started back up after a shot of epinephrine.

“She’s a tough little girl,” said David. In addition to HLHS, Kelly was also born with an atrial septal deviation (ASD) creating low oxygen levels. “She had other defects and it was kind of an unusual combination, but the combination actually proved to be very beneficial to the overall process and how it worked together,” added David.

At six years old, Kelly flew from her new residence in Maryland back to Milwaukee to have a catheterization procedure, which allowed the doctors to close her ASD without opening her up. Although Kelly continued to experience low oxygen levels and increased pulmonary pressure that never stopped her from thriving and experiencing life.

"From age six, we just sailed, and everything was great,” smiled Sandra. “We never treated her as a cardiac cripple. She was always just a little girl that happened to have a heart condition but no special favors; she didn’t require any special assistance. She was just a normal little girl.”

“We all have been truly blessed, “said David.

Like every good book, the story continues. Read the second part of this awesome story.

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science, to diagnostic imaging to regenerative therapies.