Madison Wegener was known for her courageous spirit, her empathy for others, her beautiful, contagious smile, and her crazy laugh. Even at a young age, she had a sense about her that
drew people close, and once you were a friend of Madison’s, you had a friend for life. Madison loved her Great Danes, Gatsby and Poe, historical narratives, thrill rides, horses, archery, sushi, and ice cream.
Favorite fall activities included walking through the woods, making maple syrup at her grandparents’ farm, looking for monarch caterpillars, and all things Halloween. She looked forward to participating in the Dewitt, MI
fundraiser each year, and Team Madison—running under the title of Pound the Pavement—never disappointed.
Born in August of 2005, Madison appeared to be a healthy baby. However, by October she had yet to gain the appropriate weight for a child her age, and she was deemed a “failure to thrive” baby. Numerous tests were
conducted when she returned to the hospital, but no definitive reason for her lack of weight gain was found. She was eating regularly and latching appropriately, so she was simply labeled a slow and “lazy eater” and banned
from using pacifiers. Over time she did gain weight, but she remained forever thin for her age. It was not until the age of six, after Madison passed out in her first-grade gym class, that she demonstrated symptoms of anything wrong.
Looking back, the only clue was that that year, she had remarked that she didn’t particularly like gym class, as she reported that she “couldn’t quite keep up with the other kids.” In our presence, however, she ran and played
like any other youngster, so we hadn’t thought much of it.
Madison was fortunate to have been accurately diagnosed immediately following her gym episode. Despite everything looking normal at the pediatrician, he refused to call her syncope episode a
fluke, and decided to do an EKG test. That led to a couple of “possible red flags,” and he then made some calls and got us an appointment to see a colleague of his a few days later—a pediatric cardiologist. Upon
performing an echocardiogram on Madison, she knew exactly what she was looking at: pulmonary hypertension. We were told to return home, pack our bags, and drive to the children’s hospital (about an hour away)
immediately, where a team of doctors would be waiting for us in the intensive care unit. Our first hospital stay due to PH lasted fifteen days.
Madison’s pulmonary hypertension was found to be idiopathic, and it was determined that she was likely born with her. Her pulmonary pressures were so severe that the doctors couldn’t believe
that she hadn’t passed out prior to that week, or that her fingers or lips were not tinted blue. Since we now needed a PH specialist and that hospital did not currently have one, we returned to our home state of
Michigan in order to seek treatment there. Madison wore oxygen around the clock and soon had a central line placed into her chest so that she could continuously receive medicine via a small pump. She learned to smile
at others who curiously stared at her medical equipment, and as she matured, she refused to allow PH to dictate her life. “I’m still Madison,” she would say, “but now I just have PH.”
As Madison approached puberty, her disease slowly began to progress. Her doctor was treating all three known pathways to address this progression, and by the time Madison was fourteen, she was on
eight medications, including her central line drug. Only one of them was FDA approved for use in pediatrics. By middle school Madison was using a wheelchair to get around school, as she was too short of breath to make
it otherwise, and by high school, she had to pause even to walk up a short flight of stairs. While she was evaluated and deemed a good candidate for a relatively new surgical procedure done in St. Louis, MO—the Potts
Shunt—which could alleviate some of the pressure off her heart, it was determined that she needed to try the “easier” fixes first, which included increasing her medicines. A routine echocardiogram indicated that her
pulmonary pressures were slightly elevated, but within a month they unexpectantly more than doubled. A difficult right heart catheterization landed her in the intensive care unit, and testing revealed that Madison was
in right heart failure. She was no longer a candidate for that surgical procedure unless her extremely elevated levels could come down, and instead, there was talk of having to list her for a double lung transplant.
Five days after Madison entered the hospital, she suffered a heart attack. The medical team was able to resuscitate her and get her hooked up to ECMO, a machine that uses a pump to circulate blood through an artificial
lung and back into the bloodstream, but for Madison, it was too late. Her brain had been deprived of too much oxygen, and it was determined that she was brain-dead. While her earthly body was still there, Madison had left to be with the angels.