Local residents are urged to take heart and observe through Valentine's Day, Congenital Heart Defect Awareness Week. Bedford County Mayor Chad Graham signed the official proclamation Wednesday at this office, with Haven and Mandy Shaw of Bell Buckle, and their 10-year-old son, Will, who was born with a congenital heart defect, in attendance...
Local residents are urged to take heart and observe through Valentine's Day, Congenital Heart Defect Awareness Week.
Bedford County Mayor Chad Graham signed the official proclamation Wednesday at this office, with Haven and Mandy Shaw of Bell Buckle, and their 10-year-old son, Will, who was born with a congenital heart defect, in attendance.
Graham told the family that he's walked a similar journey to theirs; his son, Daryl, now grown and a technical school graduate, was born with Apert Syndrome - a congenital disorder characterized by malformations of the skull, face, hands and feet. Daryl underwent multiple surgeries.
Will's mother explained Wednesday how her son has successfully undergone five open heart surgeries. She says it's hard to fathom that those were done before age 3.
Life, she says, took a turn for the worst when Will was 4 years old. "Following a scheduled heart catheterization in October 2014 . . . Will suffered a devastating brain injury, leaving him unable to move or speak. He has learned to speak again, but remains quadriplegic. Due to his brain injury, he has suffered from dislocated hips and required bilateral hip reconstruction (done 4 years ago in Boston.) He also has severe scoliosis for which he will likely need surgery."
Despite his ongoing physical issues, Will was the life in the mayor's recent proclamation event by entertaining those in attendance with some of his favorite jokes.
The American Heart Association estimates about 9 of every 1,000 babies born in the United States is diagnosed with a CHD, making it the most common birth defects. Sadly, most CHDs have no known cause.
So what is this congenital heart condition - which stifles the childhood of so many we love?
According to Monroe Carell Jr. Children's Hospital at Vanderbilt Medical Center in Nashville, defects happen to a baby's heart during the first eight weeks of pregnancy. A CHD is usually due to the baby's heart not developing the right way, according to the hospital, and therefore damages the heart wall or one or more blood vessels.
Vanderbilt states that some heart problems happen more in certain families, so there may be a genetic reason. Some happen when the mother had a disease while pregnant and was taking medications.
Congenital heart problems range from simple to complex, according to the hospital. Some heart problems can be watched by the baby's doctor and managed with medicines, while will require surgery, generally done right after the baby's birth.
The hospital states: "A baby may even grow out of some of the simpler heart problems, such as patent ductus arteriosus or atrial septal defect. These defects may simply close up on their own with growth. Other babies will have a combination of defects and require several operations throughout their lives."
Vanderbilt states its pediatric cardiologists follow their CHD babies. They diagnose heart defects and help manage children's health before and after surgeries.
There are now more adults with CHD than babies, Vanderbilt states. This is because survival rates have gone up due to advances in diagnostic procedures and treatments.
Those with simple CHD can generally be cared for by a community adult cardiologist. Those with more complex types of CHD will need care from a center that specializes in adult CHD.
"At Vanderbilt, we are able to follow patients from pregnancy to their time at Children's Hospital, and then on to adult care in the heart program at Vanderbilt University Medical Center."
There is also a non profit, Conquering CHD, which has a great heart for heart patients like Will. Tennessee chapter representatives recently explained how they're able to give knowledge, a voice, hope and directly meet the comprehensive, life-long needs of CHD patients.
"We create visibility and empower all impacted by CHD," says Krystle Brown, state chapter outreach coordinator. "We accomplish this through awareness, knowledge, community and research."
For more information about congenital heart defects and Conquering CHD-Tennessee, please contact Brown at 615-838-6657 or by e-mail at firstname.lastname@example.org.
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