Three-year-old Mason Shelton was born with a broken heart. And when he was just 3 days old, he underwent open heart surgery as doctors attempted to mend one of their tiniest patients ever.
At 4:30 on the morning of his surgery, I got to hold him for the first time. It was just for a few minutes, said Megan Shelton, Masons mother. I knew he was facing surgery within days of being born, but it was the fear of the unknown that made me worry.
Megan was 18 weeks along before she even discovered she was pregnant with Mason.
I found out, all on the same day, that I was pregnant, it was a boy and he had a heart defect, Megan recalled. I was just kind of in shock. I felt sick.
Doctors told Megan her baby had a heart defect known as Hypoplastic Left Heart Syndrome.
In a child with HLHS, the structures on the left side of the heart the side that receives blood from the lungs and pumps it out to the body are severely underdeveloped. According to the Cincinnati Childrens Hospital Medical Center, HLHS is one of the most complex cardiac defects seen in a newborn.
Some of the doctors recommended compassionate care where I just bring him home after he is born and make him as comfortable as possible for the little time he would live, Megan said. One doctor recommended terminating the pregnancy. But those werent options for me.
Instead, Megan spent the remaining weeks of her pregnancy researching HLHS and working with doctors to determine what would need to be done to save her sons life.
On April 13, 2007, Mason was born at Vanderbilt hospital in Nashville.
As soon as he was born, I didnt even get to see him, Megan said. They took him to another hospital to take care of him. I didnt get to see him until 14 hours later.
Hooked up to a ventilator and other machines, little Mason was being prepared for his first of three surgeries to repair his heart.
That initial surgery lasted nine hours as doctors worked to redirect blood to Masons body and build his aorta.
After weeks in recovery, and another emergency surgery due to a complication from the first procedure, Mason was finally allowed to come home. He was more than 2 months old.
I was petrified when I brought him home, Megan said. He was on 13 medicines and all we did was go to the doctors office.
At 4 months old, Mason and his family returned to Vanderbilt for his second surgery, where doctors would connect more oxygenated blood to his head.
We were there for eight days. He did amazing, Megan said. We enjoyed life once he got past that second surgery. We had cut back on the number of medicines he was taking and he was doing great.
Megan and Mason returned to Vanderbilt on his second birthday to prepare for what would be his third and final surgery to repair his HLHS defect.
The anticipation of it was a nightmare. Just knowing it was coming made it hard, Megan said. But he did pretty good. There were really no big complications.
While the surgery had been a success, Mason had to return to the hospital three days later after getting an infection. And after weeks of treatment for the infection, it looked like Mason would be in the clear.
We went to the hospital to get his IV pulled out, Megan recalled. We thought it was going to be routine, but when they pulled out the line, he had a stroke.
Two-year-old Mason suffered a stroke that left him unable to use the left side of his body.
We were flown to Vanderbilt and, that day, therapy started, Megan said. He was below a newborn level as far as control. We were doing 10 therapy sessions a week.
Today, the remnants of Masons stroke are barely noticeable. His therapy trips have been cut to just two a week and he has made substantial gains in getting back the use of his left side.
Most wouldnt even notice his slight weakness in his left hand as he plays with a toy or colors a picture like any other 2 year old child.
And it seems, at least for now, that his HLHS defect is also under control.
Our surgeries are done. He has cardiologist appointments every six months and he is down to three lifetime medications, Megan said. He really doesnt have any restrictions. We do everything everybody else does. Hes a normal little boy now.
Still, the scars of his surgeries will always be there to remind Mason and his mom just how far they have come.
Before he was born, they told me he had a 60 percent chance of seeing his first birthday, Megan said. I want him to realize what hes been through and how blessed he is. And I want him to know that, just because you have the odds stacked against you, that doesnt mean you give up.
More about Congenital Heart Defects:
February is National CHD Awareness Month. Among the dozens of different kinds of congenital heart defects, is Hypoplastic Left Heart Syndrome.
Without treatment, 95 percent of babies with HLHS die within the first month of life. Treatment means either three heart surgeries during the first two years of life or a heart transplant.
Out of 1,000 births, nine babies will have some form of congenital heart disorder, most of which are mild, according to the American Heart Association.
About 650,000 to 1.3 million Americans have a congenital heart defect.
Approximately 36,000 babies are born with a defect each year.
Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life.
Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined.