Anna and Scott Griffin call their son Brave Heart Asher. Because of his heart defect - a condition known as Tetralogy of Fallot with Pulmonary Atresia - Asher has had two open heart surgeries, three heart catheters (with another likely), and he's only 15 months old.
"He's been doing well," explained Anna. "He's still in pulmonary stenosis. He's getting 24 percent blood flow to his left lung, whereas he was only getting eight in September."
Though little Asher's journey may be far from over, his bravery is helping other parents cope with the challenges that come with treating congenital heart defects.
"It is one of the most common birth defects, and little is heard or known about it," said Anna.
That's why last year, after Asher's first heart surgery, Anna decided to start her own chapter of Mended Little Hearts, creating South Mississippi's first support group for families coping with CHD.
"You never know what the next cardiology appointment may bring. And now instead of going through it alone, we have an entire group that is immediately there to encourage, support, and pray. So it has been a huge blessing."
In the past year, the group has gathered for several big events, including the American Heart Association's Heart Walk in October.
"We've networked together, we've done a lot of research," said Anna. "We've found out about a lot of new advances in technology. We're able to connect with other groups, support one another."
That support provides assurance, that no matter how hard the journey gets, these families know they now have someone to turn to for help.
Recalling her own struggles, Anna said "I don't want anyone to be alone through this. It's too big for one person to try to do on their own."
Awareness is key, which is why Anna is thrilled that Governor Phil Bryant just sent her a letter proclaiming February 7-14, Congenital Heart Defect Awareness Week - a big step in helping her connect with other families and CHD survivors.
"These children, they have the hope and a future like any other child has. They may have more difficulties getting there, but they definitely have a hope and a future."
‘Little Heats Hold Big Hopes.' That's the slogan for Mended Little Hearts. Anna said our local chapter has more than a dozen families, but they are always looking for more. Even if you're a parent of an older child with CHD, or yourself a survivor of CHD, she would love to hear your story.
To learn more about Mended Little Hearts, click here.
By the way, Anna has big plans this year. She hopes to put Mended Little Heart care bags in every hospital nursery along the Gulf Coast. That way, when a parent is told for the first time their child has a heart defect, they immediately have access to CHD resources here in south Mississippi. She knows firsthand how terrifying it can be, because like so many others, she had no clue Asher's heart would fail, until after he was born.
Do you know the signs and symptoms of congenital heart defects? Parents should be alert to the following symptoms in infancy:
Some children with CHDs may not have any symptoms until later in childhood. Things to look for include:
If your child has two or more of these symptoms, talk to your pediatrician about a referral to a Pediatric Cardiologist.
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