27 Aug Macie’s story
Macie’s Heart Journey
In 2019, Mom Michelle, Dad Andrew, and sister Avery Kieffer stayed at the Ronald McDonald House while little Macie was inpatient at Children’s Mercy. She had been diagnosed with
Hypoplastic Left Heart Syndrome and Complex Single Ventricle Heart Defect, both incredibly rare conditions and not easy to fix. At only 4 months old, she underwent her first open-heart surgery known as The Glenn Procedure. This procedure is typically the first of many and is performed for babies born with a condition that obstructs normal blood flow through their heart. It provides relief to their one functioning ventricle and improves oxygenation of their blood. A couple months later, Macie was discharged, and the family was able to return home, but their journey didn’t end there. Throughout 2020 and 2021, they regularly would travel to Kansas City for checkups and to determine when the next inevitable surgery would be.
In 2022, at 3 years young, Macie underwent her second open heart surgery to try and further repair the leaky valve and to have a pacemaker implanted, as her heart was struggling to find its own rhythm. A year later, in 2023, Macie went in for another open heart surgery to again correct the leaky valve and undergo a Fontan Procedure- which lets oxygen-poor blood from the lower part of your body go straight to your pulmonary artery (and then lungs) for oxygen instead of going through your heart first. The procedure went better than they ever could have hoped for and she almost immediately had a blood oxygen reading in the mid 90’s rather than the 70’s! A massive improvement! After only 9 days of being inpatient, they got to once again head back home and only come to Kansas City for follow up appointments!
In 2024, right after her 5th birthday, the Kieffer family was here at Ronald McDonald House for Macie’s checkups to ensure that her heart is healthy enough to start kindergarten. They received wonderful news that not only can she start schoo
l, but that she is ahead of the curve when it comes to cognitive/learning development and her leak has actually improved a little bit! After some time spent catching up, it was clear how much they appreciated the unwavering support they received during such challenging times. They spoke fondly of Sonia in the family room, who was a source of support for mom, and Megan, their biggest cheerleader, who shared the beginning of their story back in 2019. Wylie House became their sanctuary through all the highs and lows. They found comfort in knowing that no matter how tough their days and nights were, there would always be a warm bed and shower waiting for them.
In the future Macie will still likely need a heart transplant but for now they’re enjoying all the time they have together and being away from the hospitals. Andy, dad, was diagnosed with an incurable cancer and was undergoing his own treatments at the same time as Macie. But they all still beam so much positivity and strength through their hardships that it is truly inspiring. Though her heart couldn’t find its own rhythm, Macie certainly has, by joining dance classes, playing soccer, playing t-ball and even getting her ‘Make a Wish’ trip to Disney World! Her whole family could not speak highly enough of her never ending resilience and determination to live life to the fullest no matter what. Nothing can slow this little power house down, not even her own heart.