Every parent remembers the moment they found out their first baby was on the way. It’s one of those moments in life that comes back with spectacular clarity. Vivid details. Where you were, who you were with, how you felt, maybe even what you were wearing. There’s nothing quite like that moment. Your life changes forever in an instant, and it’s not even a cliche, it’s just a fact. Whatever happens after that moment – joy or tragedy, and everything in between – that moment is forever.
This picture represents the moments after I took a pregnancy test in 2004 and discovered that I was pregnant with my first child. It absolutely tops the list of happiest moments in my life. I was ready to be a mother by then – more than ready, I was itching for the chance to hold a baby of my own. To snuggle a sweet little chubby-cheeked bundle of joy, to hear that pitter-patter of little feet, to see the wonder in my child’s eyes when he or she got to try trick-or-treating for the first time, to see that innocent face on Christmas morning beholding all the wonderful presents under the tree. That moment was a dream come true.
That was the beginning of Corey’s story. Now I’m going to walk through each of the points on Corey’s congenital heart defect (CHD) timeline, beginning with the first moment, his CHD diagnosis. (Please see the link on the home page for the complete timeline, or click here: https://jenniferannefleming.wordpress.com/coreys-chd-timeline/).
The next moment of my pregnancy that stands out in my mind with absolute clarity was the opposite of joyful. It was devastating. October 15, 2004. That was the date that Corey was diagnosed with a major congenital heart defect. The end of our dreams of a healthy baby. I remember where I was, who I was with, what I was wearing. I thought I’d felt pain and fear in my life before that moment. I was wrong. There never was pain or fear before that instant.
Corey’s heart defect was discovered during our routine 20-week ultrasound. I woke up that morning full of joy. All I could think about was learning the gender of my baby. And I did. I learned that I would have the son I always dreamed of. But then I learned that something was wrong with his heart. We would need more tests to determine exactly what the problem was. My OB was blunt. My unborn baby might be a candidate for treatment. Or he might die.
We were referred to the hospital at University of Maryland in Baltimore, and we went immediately, that same day. We met with a perinatologist. I had more tests. I felt terrified, and I had to spend all my energy concentrating on not falling apart. I needed to get through the tests. I had to know what would come next.
The news was worse than we expected. The perinatologist (incorrectly) diagnosed Corey with Double Inlet Left Ventricle. It is a single ventricle defect, and Corey does have a single ventricle defect, but we would not receive the correct diagnosis of tricuspid atresia for many more days. The picture painted by the perinatologist was horrifying. He led us to believe that, should I continue with my pregnancy, my child would be born only to suffer and die. He offered us termination on the spot. I considered it. How could I bring a baby into the world and force him to suffer and then watch him die?
For a few moments that day, I felt like there was no air. Either I would kill my child willfully – this child that I had wanted so desperately for as long as I could remember, this child who was named, who had fingers and toes, who was blood of my blood and bone of my bone, this person I loved already like no other – or I would carry him and carry my sorrow, give birth to him, and bring him home with me, where I would count his fingers and toes, fall more in love with him, and then I would watch him die. Termination or compassionate care. Is there a more soul-crushing decision a person can make?
The only other option was “get more information.” When the perinatologist threw that on the table, we grabbed onto it like a life line. I had next to no hope, but I could not make a life or death decision that day. I could not do it. Neither could my husband.
That choice led to immediate amniocentesis in order to do complete genetic testing on Corey. The doctor told us that, should the tests return any kind of genetic abnormality, the outcome was likely to be death. And he said it with no compassion. He saw a burden on society in Corey. He didn’t see the A student who plays baseball. I hate him for that.
And then we waited. In a fog of fear, we waited. It would be days before we got that information. Days before we found reason to hope again.