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.
6 thoughts on “The Beginning”
That moment/days when you were choosing between early termination or compassionate care for a newborn… My heart still aches for you. Then those magic words: Get more information! Get a second opinion! That story always reminds me that there is ALWAYS a third option when faced with two terrible choices. Get creative, look at the problem from another angle, you don’t always have to accept the choices laid out for you. YOU found your own way. We all can.
Thank you for your kind words, Alice. And you’re right, we can find our way! You’ve certainly faced adversity with an inspiring amount of courage, my friend.
I’ll never forget that day either, because I couldn’t believe the US person didn’t make you wait in the office while they contacted your OB instead, they let you return to work thinking everything was wonderful. 😦 The early care all around was miserable and I am so happy and elated your thirst and drive for knowledge kept you looking for answers and brought you to the amazing specialists who have navigated Corey through the early stages of his life.
That’s right, Shannon. You got to watch me walk into work elated and walk back out with tears streaming down my face. I have mixed feelings about the tech, though. She handled the situation poorly, but if she hadn’t been smart enough to realize there was a problem, Corey might not be here. Anyway, thank you for commenting. When I was writing the book, I noticed how many times you had wonderful supportive things to say on our old blog. 🙂
When we had our 20 week ultrasound, the tech simply said they couldn’t see all 4 chambers of the heart. She left to see if the doctor could come on us, and came back in to say they would schedule another us or send us out. No indication. She didn’t have to say there’s something wrong, but give us a heads up. We had no idea, sending us out was to a PC, six weeks later a PC (we didn’t know at the time, thought he was just OB) walks in and says I’m confirming HRHS. We are military, we had to follow up with the FMS at our Naval Hospital and she says you should get some blood work done, if your baby has Edwards or Turners, we won’t authorize heart surgery because he’s just going to die anyway. Her exact words. If my jaw hadn’t hit the ground and my husband hadn’t grabbed my arm, I would’ve punched her square in the face. I told her we were there by obligation and she had just submitted to globalize her care, so the decisions were no longer in her hand. I filed a complaint on the tech and the FMS to the Admiral. These doctors…just because they see this “all the time” need to maintain some bedside manner. I get you have to be somewhat guarded or you’ll burn out more quickly but for families, it’s usually the first and just hearing something is wrong with your baby is devastating. I am just blessed and so thankful termination was never mentioned. We also weren’t told until our son was 19 months old, that he was so severe and rare that he shouldn’t have lived through his BT or his first year of life. Our son’s HRHS was a product of Pulmonary Atresia with Intact Ventricular Septum, he also has tricuspid stenosis and severe coronary sinusoidal communication (almost RVDCC). He just turned 2 last month. Jennifer, tears flooded my face as I read your blog and it brought back so many of the same feelings! Thank you for sharing.
Thanks for your comment – it’s always nice to know that I am not alone. And I still want to punch the perinatologist in the face! I’m so glad your little one is 2 and fighting on. Corey’s 10 now – crazy to think that a decade has passed since the world turned upside down.