Neuqua's Hughes just has to play basketball
McKenzie Hughes just wants to play basketball.
That simple fact makes the Neuqua Valley junior not uncommon from thousands of other girls like her.
Her story is so much more complicated than that.
McKenzie was born with a heart murmur, detected at 6 months. Not unusual - about 1 of every 100 babies are born with a structural heart problem. McKenzie's older brother Blake was born with a heart murmur. The hole in the heart that caused Blake's murmur closed up. McKenzie's did not.
At age 4, after McKenzie became sick following a dentist checkup, it was found she had defects beyond a heart murmur. She was diagnosed with pulmonary stenosis, which cuts off the air supply between the heart and lungs. A child with such a condition runs out of breath easier than others.
In seventh grade McKenzie's heart beat started to race just sitting in class. A condition called tachycardia was diagnosed. She wore a heart monitor and was inactive for 3-4 months. A cardiac procedure followed at Children's Memorial Hospital and a second procedure was done in eighth grade after a recurrence of tachycardia.
Last summer McKenzie experienced shortness of breath after just minutes on the court. She disclosed this to her cardiologist at a routine preseason physical. He would not sign off on her playing and put her on a cardiac event monitor.
A hurt McKenzie cried in her car after hearing she could not play. She placed a painful call to her coach with the news.
Diagnosed with Attention Deficit Hyperactivity Disorder her freshman year, McKenzie had found an important outlet, a focus in basketball.
"I was shocked," she said, "speechless. Basketball is pretty much my life."
Within 24 hours the problem was discovered, a condition called supraventricular tachycardia. Sports were halted and she was referred to an electrophysiologist, who in October performed an ablation at Good Samaritan Hospital in Downers Grove to correct the heart abnormality.
However they could not fix the pulmonary stenosis. McKenzie would have to go to Cleveland for that procedure - but doctors have cautioned that 1 of 100 patients would not make it through and they would not put their child through it. The Hughes family chose not to for now.
"It is so draining as a parent," said McKenzie's mother, Shannon.
The cardiologist cleared McKenzie to play with limitations. She takes a beta blocker once a day at lunch, and an inhaler prior to games and practices. She promised doctors that she would tap her chest to indicate to Neuqua coach Mike Williams when she is short of breath and it is time to give her a rest.
"She poured her heart out to doctors," Shannon Hughes said. "The doctors have gone overboard to let her play."
Managing McKenzie's health is a full-time job for the Hughes family.
McKenzie has low blood pressure and is easily fatigued. She eats a special diet high in salt and gets plenty of soup, plus her favorite, Chinese food. McKenzie sleeps at home for 2-3 hours every day after school. She has learned to do homework on the bus to keep up. Weekend sleepovers are limited to Friday nights.
"She has to push herself to be active," Shannon said, "and she does."
McKenzie has high hopes of playing basketball beyond Neuqua. She has received more than 200 pieces of Division I mail over the last six months, and one Divison I school is ready to offer a scholarship.
That future could depend on her grades. Shannon estimated that McKenzie has missed 20-25 school days a year because of an immune deficiency disorder, putting her behind on credits.
McKenzie's medical history is no secret to colleges. At Neuqua every doctor's release and medication that McKenzie is on is kept in writing. Numerous tests done post-operation have given the Hughes family, and Neuqua Valley, assurance that it is safe for her to play.
"No games are as important as a kid's health," Neuqua coach Mike Williams said. "If there was even a smidgeon of concern she would never be out there."
In 2004 Neuqua 17-year-old Roosevelt Jones died of an undetected heart ailment while playing pickup basketball at the school. Last year Waubonsie Valley junior Zumari Doby collapsed and died while playing in an AAU basketball tournament.
Shannon Hughes is relieved to not have that fear now every time she sits in the stands to watch her daughter play.
"We've been through mixed emotions, to be honest," she said. "We're frustrated why the pulmonary stenosis can't be fixed and why it has to be such a high-risk procedure.
"But yet we are blessed that basketball is so important to her that she is able to keep playing and keep plugging forward."
jwelge@dailyherald.com