Diagnosis day. The day I became a heart mom.
Ask any heart mom and they will tell you that this day is etched into their brains just as vividly as the day their heart warrior was born. Whether it was at their 20 week ultrasound, 36 week growth scan, the day their baby was born, or five days after they were home from the hospital, it doesn't matter at what point in their journey it happened. If there is one thing I know for sure, it is that the day they heard the words ‘there is something wrong with your babies heart’ forever changed the trajectory of the rest of their lives.
My D-Day spreads across two days – starting with November 10, 2011. It was a Thursday and the day before that we had our 20-week ultra sound. We were told they were having a hard time seeing the spine so I was told to come back the next day to get a better look.
My husband had off for Teachers Convention and we were just spending an ordinary day together with our 2 1/2-year-old and some close friends at the American Museum of Natural history before I had to go in for my second appointment. That evening I went back alone for what I thought was a second look at my babies’ spine.
There are colossal moments in every persons lives that are simply engraved internally and every detail remains- even years and years after. For me, that day is November 10th, 2011. Like I mentioned, I went alone – after all, it was supposed to be a quick look at his spine.
After a long wait, I was followed in the room by a man who introduced himself as Dr. Principe. At that moment, I knew that leaving Rob at home was a terrible mistake and that measurements of my baby's spine was not why I was called back. I immediately questioned him about his presence in the room to which he replied with the generic 'doctors always come in for check-ups' and to which I challenged saying that I have never had a doctor in the room with me through all my ultrasounds- this baby, or my first. He didn't respond to that- he just asked me to lie down and they started looking at the picture on the screen of our baby boy. The terms and facial expressions they were using were all so foreign to me and even though I knew something was wrong- I was scared to death to ask. After what felt like forever and with tears now streaming down both sides of my face, I finally worked up the courage to ask what was wrong with my baby.
That evening, a doctors' 30-second diagnosis completely changed our lives.
He told me my baby's left heart was too small. He helped me sit up so I could begin to process. I was obviously upset, but my initial thought was that there was definitely more than enough time left in utero for it to still grow. I could tell based on his facial expressions and comments that he didn’t think that would be the case. And then my thoughts went the complete opposite direction and I asked him if my baby would live. He said that was unknown, but what he did know was that our baby would undergo open heart surgery within days after being born in attempts to save his life. This news made me nearly pass out. I remember grabbing the arm of this man I had just met less than 5 minutes ago and not caring that I didn't know him- I just needed someone to balance me, and he was the only one there. In hysterics, I tried to make sense of it- tried to compose myself and be strong. I tried to ask all the questions I could think of and tried to figure out what was happening to us. But nothing I asked and nothing they said could have prepared me for what the next few months would have in store for us.
I walked out of that hospital in a total fog. I called Rob, my parents, my sister and best friend. I didn’t know what to say to anyone, really- but I also didn’t want to be alone with my thoughts. By the time I got home, Rob had already worked his way through to the end of the Internet and the only thing he could find about a small left heart was, of course, Hypoplastic Left Heart Syndrome. I remember thinking and saying well that’s the worst possible case so it won’t be that. Can’t be that. I had no idea at that moment how much that term would ultimately affect my life. A condition I had never heard of before would come to take over every part of my previously innocent world.
The next day at 8am Rob and I walked into a pediatric cardiologists office waiting to have an echo on our unborn baby. After a torturous hour-long ultrasound where no one spoke, we were then led into a room where a doctor met us and told us our baby had a very severe case of Hypoplastic Left Heart Syndrome. One of the worst he had ever seen. I remember sitting there having given Rob the paper and pen to take notes on what the doctor was saying. He was explaining everything so fast- it felt so foggy. I remember looking over at Rob to make sure he was getting it all down and he just sat there with the pen in his hand and a blank look on his face. I grabbed the paper and pen and started writing as much as I could.
Tears were streaming down my face as I wrote our options:
2. Place the baby on a heart transplant list.
3. Comfort care.
4. A three - stage surgical process to repair the heart.
Even as I type this now- almost 6.5 years later – I remember exactly how I felt at that moment. What do half of these options even mean?? Which of these options is the one where the heart defect goes away? Which is the one that says this is all just a HUGE mistake? I kept waiting for that moment. Like he would say oops! Wrong baby! Your baby – of course- has a perfect heart! Now go on and live the rest of your life in naïve bliss!
He aggressively brought me back to reality by drawing a picture of Hayden's heart and compared it to a 'normal' heart. He said the odds were against us and kept repeating option #1- 'terminate'- as if that were our best option. I knew for me it was never an option- I had been carrying this baby for 21 weeks and already loved him with all of my heart. But why were they not giving us any hope? And why, if this is so fatal, have I never heard of it before? My mind was in a foggy spin. What was happening??
We were there for a total of 3 hours and when we left, I still felt clueless. Soon after, my OB called to tell me that we needed to decide in a few hours if we were going to terminate because if so, it had to be done on Monday based on his availability and the NJ laws.
Talk about the hardest conversation. I thought Rob and I made a pretty good team with parenting Jackson before this. But if there is a defining moment that ‘team Dorsett’ truly was born, it was at that moment. When you have to sit across the table from the man you promised to spend the rest of your life with- for better or worse- and then have to talk about the ultimate outcome of your unborn baby – well, there’s nothing more significant than that.
The entire time we were talking, I just kept thinking that just the afternoon before we were perfectly happy and normal- roaring at dinosaur bones, laughing, playing- excited about our pregnancy. Less than 24 hours later we were no longer normal. We were no longer laughing and we were no longer happy. Our world would never be the same as that day. Rob and I still look at pictures from that carefree day and tear up at the thought of how 'easy' and uncomplicated our lives were then. How blissfully innocent and beautifully naïve we were.
Ultimately if you know Hayden’s story, you know we chose option #4- the three stage heart reconstruction. Our next decision was Children’s Hospital Of Philadelphia, where we chose Dr. Spray to be the man to fix our babes heart. And, you also know if you’ve followed Hayden, that the decision that deemed Rob and I as a team on November 11th was just the first of many difficult decisions in parenting our HLHS’er- but that the definitive decision through our partnership was made just over 9 months later when we ‘chose’ with again no option worth choosing, to pull the plug on our babies life and kiss his beautifully perfect face just one last time.
November 11- Diagnosis Day - the first day in Hayden's journey that is burned in my memory and in my heart forever. The day Rob and I learned what it really meant to be a team in the world of parenting. The day we chose to fight with all we had for the best care we could find – and give him all the love we had. All the love. Every day.
Diagnosis Day – the day I became a Heart Mom.
Guest Post written by Ady Dorsett, Hayden’s Mom
Short Bio: "As Hayden's parents, we are the founders and directors of Hayden's Heart INC. We started this foundation just a few months after he passed away out of desperation as a way to keep Hayden's memory alive and help raise awareness for CHD. Hayden has always had a lot of supporters from his followings on facebook and we felt with support like that, we just had to keep it going in hopes of helping other families like ours. It has given us a way to feel like we are helping Hayden live on and to us, there is nothing more important."
Please visit Hayden's Heart and Hayden's House of Healing by clicking on the links below. The Dorsett's are currently raising money for their dream of starting Hayden's House of Healing; a retreat for not only bereaved mothers, but also for families, couples and children to find peace, solace, comfort and understanding as they navigate their own personal loss.
Comments will be approved before showing up.
I'm not exactly sure why I used the R-Word, but I did.
I even grew up with a Great Aunt who had Down syndrome — someone I loved very much — and yet I used that terrible word like it was no different than "apple" or "pretty".