how it all began
mad merry photography
Congenital heart disease/defect is a wild ride. When baby boy was born we had no idea what to expect.
In early October of 2019, we found out we were going to be parents for the first time. So many emotions came over us… the most of which was JOY!
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In January 2020, we had an anatomy ultrasound scan. We knew it would take a little longer but after two hours we started to worry. Then the doctor came in, something was up. She said… it is a BOY! We laughed and smiled. Then she said “BUT”… our son seemed to have an abnormality related to his heart. Time stopped. I couldn’t hear anything else she said. We left that appointment shattered by this news.
mad merry photo
what is chd?
CHD stands for Congenital Heart Defect.
Congenital heart defects are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. CHDs can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).
About 1 in 4 babies born with a heart defect has a critical CHD. Babies with a critical CHD need surgery or other procedures in the first year of life.
more than half a heart…
Our son has a single ventricle heart. His physiology is completely different than most people. His standard of life, his quality of living is completely different. Children living with a single ventricle heart are truly miracles. They fight to be here, for the experience of living. It is as if they come into the world with the understanding of life’s fragility and preciousness.
Parenting a child with congenital heart disease/defect gives you so much prospective. It’s devastating to get the diagnosis and you have to allow yourself time to process or grieve. But CHD is just one aspect of your child’s life. They have so much to give, so much to teach.
