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Growing Up with CHD, Into a Precious Piece of Art

Apr 10

Posted by: ACHA
4/10/2014 9:55 AM  RssIcon

By Kim Russell

Over the past few years, I have had opportunity to visit with many CHD parents across the United States. Listening to their stories, triumphs and challenges has made me realize that their work is much like that of a sculpting artist.

They find out their child has CHD, which is something they know nothing about—they have been given a precious amount of molding clay. So the first thing they do is gather all the tools and information they will need to form this precious child into a strong, independent adult. Then they begin their work of molding, so that each curve and edge is just the right shape.

This is followed by sanding to obtain a smooth, clean edge. Then, like a sculptor, they begin working on the details: teaching them about their defect, helping them learn about their medicine and the fine art of remaining in CHD care.

They work for years to reach a very precious goal. Their child has become a wonderful, independent CHD adult. How proud they should be of their work and the final result! But the decision of the next step is the hardest of all.

Do you set your artwork (child) on a shelf in a closet where it will be safe or do you give your piece over to the art museum of life to be put on display? Allowing your child to live as an independent adult is very hard to do after there has been so much attention and work put in over the years. But the joy they have in knowing that you are proud of them and want them to succeed in life as an independent adult is priceless!

Kim Russell, who is also an ACHA Heart to Heart Ambassador, was born in 1960 with a double inlet single ventricle (left) with pulmonary atresia and chronic cyanosis. At three months she had her first Blalock–Taussig shunt and at age four, had another. Her final surgery was in 1992, at the age of 32. All along the CHD journey, she and her parents knew no one else with CHD. As Kim says, “No one else should to have to grow up or experience any CHD issues alone. We are all in this together!”

Copyright ©2014 ACHA

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1 comment(s) so far...


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Re: Growing Up with CHD, Into a Precious Piece of Art

Thank you so much for this post. As a mom of a 31 yr old Fontan patient who is doing very well, we are going through this transition right now. My own heart is so connected to his.

By Terri Keck on   5/11/2014 1:58 PM

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