JONESBORO, AR (KAIT) - Makenzie Aldred should not be alive.
Dubbed "The Miracle Child" by her doctors and family alike, Makenzie suffers from a form of Congenital Heart Defect that should be diagnosed when the mother is pregnant or shortly after delivery.
Left untreated, most children with Hypoplastic Left Heart Syndrome don't live beyond two weeks.
However, Makenzie, who's known by friends and family as 'Mak', wasn't diagnosed until she was 4½ months old. She's now a happy-go-lucky 2½ year old who's proving that Nothing Beats the Mak.
Makenzie's daily routine is a bit different than most children her age. She's mostly fed through a special feeding tube.
"This connects into her button and we feed her by gravity," Makenzie's mother, Renea explained.
A drawer in the kitchen houses all of Makenzie's medicine. She takes upwards of 10 medications a day, some of them, multiple times a day.
"She's on Enalipril which helps the functioning of her heart," Renea explained. "The only ones I'd heard of were Aspirin and Prevacid."
From all outward appearances, Makenzie is a healthy, happy 2½ year old. In fact, if you didn't notice the small scar that peeks out above her shirt, you might not know Makenzie suffers from a very rare congenital heart defect.
What Makenzie calls her "owwies" serve as reminders of what all she's endured so far.
"All these are where her chest tubes were," Makenzie's father, Brad told Region 8 News as he pointed out the multiple scars along her stomach. "It lights me up just the way how sick she actually is and how she actually acts...you couldn't tell. If you didn't see the scar, if you didn't know her story, you wouldn't be able to tell."
Her story started when she was 4½ months old. For months, Makenzie hadn't been gaining weight. Renea and Brad sent her for an echocardiogram in Jonesboro.
"We were told she had a moderate sized hole in her heart," Renea said. The Aldred's were referred to Arkansas Children's Hospital, where they redid the echocardiogram.
"That's when the told us that there was something major wrong," Renea said. "All they told us at that time was that she was in congestive heart failure."
That day brought the Aldred family into a world they never knew existed.
"They said we were being admitted to the CVICU and I was like 'what's that?' I had no idea there was a cardiovascular unit full of sick heart babies," Renea said. She also would've never assumed that her daughter was one of those sick heart babies.
"You have this baby home with you for 4½ months and you think she's healthy and she wasn't," Renea said.
Hypoplastic Left Heart Syndrome is a rare congenital heart defect that leaves the left side of the heart underdeveloped.
"They told us at that time that she would have to have three open heart surgeries," Renea said. "They do them in a series and each one would kind of make her heart work better."
Makenzie should have had her first open heart surgery, called a Norwood, soon after birth, not at four months old. However, because she wasn't given a pulse oximetry test a birth, her heart defect went unnoticed.
A new Arkansas law will make sure that won't happen again.
"The test is not going to change whether they have a congenital heart defect, but it will get them the treatment they need in a timely manner," Government Relations Director at the American Heart Association, Barbara Kumpe told Region 8 News. "The pulse oximetry test gives them the oxygen level and helps the doctors look further if there is an issue," Kumpe explained.
Kumpe assisted in getting the Pulse Oximetry Law, Act 768, passed in the Arkansas legislature.
"Many babies may go home for two or three days, or weeks or even months before the parent even realizes there is a heart problem," Kumpe explained.
Though Kumpe said many hospital already voluntarily give newborns a pulse ox test, mandating it will ensure every newborn in Arkansas is tested at birth. The simple, noninvasive test will cost hospitals $5 per test on average.
"Babies all across our state will be screened they'll have an opportunity, some of them, an opportunity at life," Kumpe said.
While Makenzie is beating the odds, a simple test could've made a difference in her life.
"If she'd had the testing at birth, we would've been on schedule for all the surgeries. That's kind of the thing to, going into these surgeries, they don't know. Are the risks higher? We don't know. It's always we don't know. We've never done it at this age, we don't know if it'll be successful," Renea explained. "There's so many other stories that you hear like that, where it's missed...and they don't all get the chance that Makenzie has."
Makenzie had her second open heart surgery, the Glenn, at 2 years old. Most HLHS babies have the Glenn between 4 and 12 months old. The Aldred's will schedule her third open heart surgery, the Fontan, later this year. Doctors recommend she have a heart transplant later in life.
You can continue to follow Makenzie's story here.
If you, or a loved one, are living with CHD, there is a group out there to help; the Arkansas CHD Coalition.
According to Dana Hageman, the founder of the Arkansas CHD Coalition, the group is a "network of Congenital Heart Defect patients, parents, families and medical care providers in Arkansas bonding together to help support each other; to support other organizations with similar goals; and to organize awareness and fundraising events for CHD causes. Arkansas CHD Coalition was started in February 2011, and over the past two years has grown to a membership of approximately 250."
The group has also chartered a local chapter of the national support organization, Mended Little Hearts. The Mended Little Hearts of Little Rock is open to those all across Arkansas.