MOUNT VERNON — On April 15, 2016, a little warrior named Maci was born into the Whisner family — Josh, Karissa and their then 1 1/2-year-old son, Jake. Within the past 14 months, the family has battled through many life-and-death situations in order to keep her safe and healthy, but it was Maci who, despite her diagnoses of several fatal congenital heart defects, not only has survived, but has inspired countless families around the world who are caring for children with similar heart conditions through her Facebook page Maci’s Mended Heart.
Josh and Karissa knew early on in the pregnancy that Maci would be born with at least two heart defects and would be missing two chambers of her heart.
“When I went in for my 20-week anatomy scan, we realized something was wrong,” Karissa told the News. “We were referred to Riverside and were told that the left side of her heart did not develop. That’s when she was diagnosed with Hypoplastic Left Heart Syndrome. She also had what was called Double Outlet Right Ventricle, so her aorta developed on the right side of her heart (instead of the left).”
Doctors initially believed that Maci’s DORV formed as a way to compensate for her HLHS defect, which would help her heart function, although differently than the average heart.
“(During pregnancy, the doctors) told us that she would do better than the typical HLHS patient, her chances were very good for surviving the surgeries and she should have a good quality of life after,” Karissa continued.
However, shortly after Maci’s birth, an ecocardiogram revealed several more defects in her heart. Her doctors concluded that due to these additional defects, part of her heart would be inoperable and that her survival rate after surgery on the operable part of her heart would be slim.
The Whisners, realizing she would not survive surgery, decided to take their one-day-old daughter home on hospice. Family and friends gathered at the home to meet Maci and soak up as much time as they could get with her.
Miraculously, despite the doctors’ predictions, Maci held on strong, determined to stay with the ones who loved her. Hours turned into days and days turned into weeks. Maci started staying awake for longer periods of time and even began eating.
“We didn’t even expect that she would make it a week, but when she was a week old, our pediatrician called and asked about second opinions,” the strong, determined mother said. “That’s when our whole journey took a different turn.”
At three-and-a-half weeks old, Maci had her first open-heart surgery and her second surgery at six months. Since that time, she has also had four heart catheter surgeries, all of which proved to be extremely successful.
In April of this year, Maci was also diagnosed with a genetic condition which has been found to be the source of many of Maci’s defects.
“She has Mowat-Wilson Syndrome, which was diagnosed four days after her first birthday,” Karissa said. “(It) causes moderate to severe intellectual disability. Most kids are non-verbal. Some kids don’t walk and it does cause defects of the brain, eyes, heart, the GI track. So, now we know that is responsible for many of the things going on with her.
“She has a lot that she’s up against, but she’s doing great. Right now, we are so thankful for that.”
Today, Maci is a happy, healthy, bubbly baby who loves to smile, wave and blow kisses to people she loves. She has even learned how to communicate with her parents through several sign language gestures. Her favorite activities include playing with her older brother, Jake, and going to the park with her family.
Through her warrior spirit, silly giggles and smiling face, Maci has changed her family forever. She has taught them the importance of living life to the fullest and to “not sweat the small stuff.”
“People assume that we have so much stress on a daily basis, but this is kind of our new normal now,” Karissa said. “We have just learned to enjoy each day … and see what’s important.
“She’s brought us so much happiness. … We are so thankful. I would do all of this all over again in a heartbeat, because she truly brings us so much joy to our lives.”
Throughout Maci’s journey toward health, Karissa documented every struggle and glimmer of hope the family endured through the Facebook page Maci’s Mended Heart. She began the page while pregnant with Maci as a way to share any news she received from doctor visits with her family located around the U.S.
“It was strictly just a thought that it would help our family and friends be on the same page with what was going on in our lives,” Karissa said. “I never imagined that it would be anything more than just family and friends. But, when we took her home on hospice, the page got shared over and over again.”
To date, Maci’s Mended Heart has 27,227 followers from around the world. According to Josh, through the page, the family receives messages from people in Germany, Australia, “anywhere and everywhere.”
“We get a lot of encouraging messages, saying that her story has changed their lives, giving them a different outlook and helps them find God,” Josh said. “It’s pretty cool to hear everybody’s stories.”
Through Maci’s Mended Heart, Maci and her family have become a symbol of hope for parents of children with congenital heart defects. Karissa and Josh are able to connect with other families coping with heart defects, offer advise, encouragement and kind words.
“I remember the time so vividly, wondering how long we’d have with her and what this journey would be like,” Karissa said. “Now, it’s just our new normal and I’m glad that we’ve been able to network with so many other people who are going through similar things. Life is pretty awesome right now,” she smiled.
In addition to receiving support from family, friends and online Facebook followers, Knox County community members have offered the Whisners mounds of help and prayers.
“It has been truly amazing how many churches have added (Maci) to their prayer list, have followed her story and updated the whole congregation every Sunday,” Karissa said. “It has truly helped us know how many people are praying for her and are thinking of her. We’ve never felt alone on this journey.”
Like Maci’s Mended Heart on Facebook for updates about Maci and her family at www.facebook.com/Macis-Mended-Heart-863095637140423/.