Event aims to raise awareness, funds for congenital heart defects

    About 1 in 100 children have congenital heart defects. An event in Bryn Mawr on Saturday, July 24th, aims to raise awareness, and funds.

    About 1 in 100 children have congenital heart defects. An event in Bryn Mawr on Saturday, July 24th, aims to raise awareness, and funds.
    (Photo: Andrew Rodebaugh (in the red T-shirt) with his brothers )

    Susan Elliott’s son Quinn was born with a congenital heart defect. She says it is very common, but not well-known:

    Elliott: CHD is the number one birth defect among children, and nobody’s ever heard of it. You don’t hear about it like you hear about cancer, and CHD actually has a higher mortality rate than all of the childhood cancers combined.

    Elliott’s son is 2 now, and doing well.

    Lisa Rodebaugh, a Philadelphia mother of four says she was completely unaware of these defects.

    Rodebaugh: I didn’t know that a baby could have something wrong with their heart!

    Rodebaugh’s son Andrew, who is almost ten, was born with a severe heart defect. He has had three open heart surgeries, and is doing well today with the help of medications. Rodebaugh says her son was not diagnosed at birth, and almost died when he went into cardiac arrest four days later. So she and her families participate in outreach events to spread awareness:

    Rodebaugh: It’s extremely common, but it’s also extremely fixable when you know about it

    Dr. Jeff Boris, a pediatric cardiologist at the Children’s Hospital of Philadelphia, agrees that many of the heart defects and related health problems are highly treatable today.

    Boris: We have really gone very far in the ability of not only in helping these children and now babies to survive into adulthood, but really have a very good quality of life. It is very rare that I have to say to parents that the news is so bad that I can’t do anything for your child.

    A series of quilts honoring people living with congenital heart defects will be shown in Bryn Mawr.

    The Congenital Heart Disease Awareness Quilt Project Show takes place Saturday, July 24th from 11 – 3 in Bryn Mawr, at “Our Mother of Good Counsel Auditorium”. The Congenital Heart Defect Awareness Quilts are a series of quilts, with each quilt honoring 42 individuals with CHD.

    The show in Bryn Mawr is held in memory of James Matthew Mannix (10/2/01 – 10/13/01) who died from complications related to the treatment of his CHD. James’ mother, Mary Ellen Mannix, has become an advocate for patient safety and awareness of CHD.

    Funds raised by the congenital heart defects awareness quilt project go toward treatments and research.

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