Lessons Learned through Congenital Heart DefectsFebruary 11th, 2013 | Posted by in Parenting
My son Cain was born with a rare congenital heart defect called Hypoplastic Right Heart Syndrome.
I thought scheduling my 20-week ultrasound on my 30th birthday would be the best birthday present I could give myself. However, I wasn’t expecting to receive the devastating news I received that day. We found out that Cain would be born with several severe congenital heart defects and would need a series of three open heart surgeries to survive. I never in a million years expected to hear the words, “I’m sorry but your son is missing a portion of his heart”.
Since that day I’ve learned so many things I never expected to learn such as the fact that congenital heart defects are the most common birth defect, or that it is the leading cause of infant death. Who knew? That is certainly not something I was thinking about when I went in for that 20 week appointment. I get to talk to people all the time about Cain. I get tell people his story. How he is living life with only “half a heart”.
What I don’t always get to tell people are the many things I’ve learned since that the 20-week ultrasound.
I have learned that children born with congenital heart defects are some of the strongest most amazing warriors I’ve ever met. Some of them may not have a full functioning heart beating inside of them. Some of them may be living life without the heart they were born with after needing a transplant. Some of them may have only had one open heart surgery and others may have gone through several heart surgeries. But all of these children are so full of life and very special.
I’ve have learned that there is a bond with heart parents that can’t be explained. I’ve gained amazing friendships since Cain’s birth. These parents know exactly what I’m going through. They know the hardships but they also know the joy that comes from having a child with congenital heart defects.
I’ve learned it’s hard when you leave the hospital and there are no monitors. Or if you do have to come home with monitors, there certainly isn’t a section in the “Baby Wise” book on how to get your child to sleep through the night comfortably and safely with heart rate wires, pulse oximetry wires or a feeding tube all around them.
I’ve learned to appreciate things that I most likely would have taken for granted. I always expected my child would look the same as other kids. I never expected seeing him with pink lips and fingernail beds would be so exciting after seeing him with blue tinged lips and skin for so long.
But one of my biggest lesson I’ve learned since that 20 week ultrasound is I would absolutely do it all over again and in the end it was the best birthday present I’ve ever received. My child who was born with a broken heart has taught me more than I ever thought possible, and I wouldn’t change it for the world.
Catherine Clinkscales is a stay-at-home mom to Cain Clinkscales (Age 4) and Callie Clinkscales (Age 2) and serves as a parent liaison on the Family Advisory Board Council at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
Editor’s note: February is Heart Month and February 7-14 is Congenital Heart Defect Awareness Week. On Tuesday, February 12 families affected by congenital heart defects, physicians, nurses and hospital staff are invited to a reception at the Monroe Carell Jr. Children’s Hospital Theater (2nd floor) from 12-1:30. Lunch will be provided.