Why Heart Defects Break My Heart

Congenital Heart Disease is one of the commonly found health complications for individuals with Down syndrome. Today, thanks to advances in cardiology, most defects can be corrected surgically. While the competence of cardiologists should offer comfort, it really isn’t a ‘solves all’ to soothe one’s emotions in the moment. If you have tangoed with your child needing surgery you feel me. I have danced this dance and it wasn’t my idea of a good time. Looks like I will be, unfortunately, getting in a couple more rounds on the dance floor.

Last June I watched my two year old son get carried away in a purple gown. Our eyes held contact the entire length of the hospital corridor. His were glazed with confusion, masked by Versed. Mine locked on his every detail, not daring to waver but paired with a slight quiver in my bottom lip. It took every ounce of my resolve not to scream out. The minute the door separated us, I let the tears quietly pool and begin their travels cascading down my cheeks. My throat contracted and my chest felt hollow. There goes my baby. Nausea came in and out like waves crashing down on my spirit of helplessness. All I could do was sit and feel limp and heavy at the same time.  I wanted to chase down the nurse and grab back my boy, my naïve and trusting little boy. I wanted to feel his pudgy warm body in my arms, and run away from the whole situation. I wanted to shield him from the pain he wouldn’t understand. All I could do however, was sit and wait. Wait and pray that they knew what they were doing. 

I never imagined I'd be thankful for the experience of my son's heart surgery. 

Here we are, nine months later, tilting our chins upward to see that giant looming in our future once again. Our little lady Lottie will need multiple open heart surgeries. This time, I can at least enter the dance floor wearing appropriate shoes.

This is not a freestyle dance. There are moves  to learn and a rhythm to follow. Through experience, here’s what I know to be useful and necessary.

First of all, I would suggest to a find and love your pediatric cardiologist. You need to trust and have full confidence in this person. You want to know that they are not only incredible at their job, but that they will take the time to patiently and clearly explain everything from basic anatomy and medical terms to each echocardiogram your child will have done. Fear doesn’t lean towards trust. If you have any doubts, find another professional who is a better fit. 

Next, choose a hospital that meets your needs. You can call and ask for every policy such as time limits and max number concerning visitors, bringing in food, staying the night in your child’s room, etc. Triple check that your choice of facility is covered and in network for insurance. Scout out the hospital and find it to your liking, because that is where you will be camping. 

Another thing: what isn’t helpful. When you share with friends that your child has a heart defect you will, 90% of the time (that’s a made up statistic) hear the classic response, ‘I’m sure everything will be ok.’ It’s inevitable, so prepare yourself with me. It didn’t have the desired effect the first go around and it won’t the second. No one knows what will happen, if it will or will not be ok, so while i appreciated prayers and wishful thinking, I dismissed and ignored unfounded predictions or fabrications of our future. As a supportive friend to someone enduring this situation, I have made a mental note to express my desire to understand the specifics, (because every VSD to AV canal is unique) and ask how they are coping. No hollow reassurances and no stories of other people and their various heart defects. 

Finally, focus on the end result. I theoretically knew our Hudder Butter ‘needed’ his repair. Four hours after his procedure, my understanding of the necessity of this event became tangible. This kid, who was always the bottom percentile in weight and couldn’t get both feet off the ground, is now a big energetic bouncing ball. He can jump! Who knew? He actually calls it ‘bumping’. ‘Momma me bump,’ is the common prelude to getting busted in public settings like the library or pool. I can’t find it in my heart to stop him. I think, ‘Your heart is strong now, why the heck not, bump away dude!’ Anyways, in the end, the surgery will be worth it. It was worth it for Hudson. It will be worth it for Charlotte. This fact I cling to.