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Share Your Story: Mindy Andre

by Christy D. on Friday, November 8, 2013

Mindy Andre Missouri

I never gave much thought to heart disease before the birth of my youngest son, even though my father had suffered a heart attack years before. "On December 30, 2010 the entire way I thought about many things" shifted. This was the day my son Silas was born, we completely expected an uneventful welcoming, we already had two other healthy children.

After his birth he began to have trouble breathing and was quite blue. The NICU at North Kansas City hospital was called down to take a look at him and they concluded that he must have just had some fluid in his lungs because he began to breath better. He was whisked off to the nursery to get cleaned up while I was moved to my room on the floor above where he was born. We waited and waited for him to be returned to us all cleaned up and had visitors waiting to meet him as well. I asked the nurse about when they would be bringing him, it had been about six hours since I was moved. Having two other children beforehand, I knew this was a bit unusual to be apart this long. The nurse returned and informed me they would be bringing him to me soon but they had heard a murmur and wanted to call in cardiology. She assured me that it was probably nothing but they wanted to be cautious.
 
On New Year’s Eve an EKG (heart test which tests the electric function) and an ECHO (basically a sonogram of the heart) was performed by a cardiologist from Children’s Mercy Hospital. My husband had left for awhile and I was all alone when the cardiologist came in to tell me the news. Silas had what they called Ebstein’s Anomaly, a displacement of the tricuspid valve. I tried to hold back the tears but I was devastated and scared and knew nothing about heart defects or the implications of having a child with one. We were lucky enough to come home like a regular newborn and followed up about 3 weeks later in the Cardiology Clinic.
 
This is when everything I thought I knew changed. He did not have Ebstein’s as originally thought. There were a few other minor heart issues, but the main diagnosis now became a form of cardiomyopathy.  Specifically, dilated non compaction of the left ventricle. Say what? Yet another term I had never heard of. Googling it became even scarier, all the results talked about what a high mortality rate there was with this disease and how rare it was. Needless to say I was a mess, emotionally, for about a year, during which I read and studying anything and everything I could find. He was put on medicine which helped his heart function much better, and he underwent genetic testing which revealed a mutation in the MYH7 gene, a known heart gene that tells the muscle how to function properly.

I underwent testing shortly after and I did not carry the gene and just recently my husband was tested and he too is positive. He also shows signs of cardiomyopathy as well. Our two older children were tested this fall and they too have the mutation, but no disease at this point. They will be followed by cardiology from now on to check for disease development. So, after the birth of a very special boy, our lives changed forever and we now know information that could potentially be live saving for other members of our family. I never would have imagined that this would happen to my family, but I have gained so much knowledge and I am committed to supporting research efforts to better understand heart diseases and cures. I am very thankful that Silas has done so well, but there are daily medications and frequent doctor visits ahead of us for a lifetime, but he is well worth it!