Hi! I’m Tara. I am Mommy to three wonderful little girls (this is a recent development, within the last couple of weeks so writing “three” here is very strange for me). If you haven’t heard it a million times by now, 1 in 100 are born with a CHD. In my family, there are three of us, myself, my nephew, and my daughter. Our eldest daughter, Amelia, is my cardiac kid and she will be six years old in May 2015. I have been a stay at home mom since Amelia was born, a decision that was not easy and I’m sure to write about it somewhere down the line. I’m sure I’ll also write about the multiple CHDs in my family too, all different ones, mild, moderate, complex.
I found out I was pregnant the same day I picked up our puppy after having had her spayed, something I always found to be a funny coincidence. The pregnancy went well, I was rarely nauseated and overall, felt okay. At the 20 week ultrasound, where they check the heart and chambers (this is what I know about it now, whereas then, all I cared about was that I was going to be able to know the sex of the baby, how silly of me), we found out we were having a girl. We did not find out about our daughter’s CHD. There are a few theories that have floated around as to why we didn’t find out then. One being that it was technician error, likely, we certainly weren’t being followed by the techs at Sick Kids at that point, and another is that our daughter was born with all four chambers, so possibly, they were just counted and the tech moved on without seeing her complexities, also likely.
I was induced at 38 weeks and our beautiful, plump (later known as fluid retention), sweet baby girl was born. I was discharged from the local hospital the following morning. On day 3, just like all the other new dutiful moms, I brought my baby in for her first doctor’s check up. I was excited to bring her in and show her off, she is the most perfect baby ever born after all, and it was emotional because I was bringing her in to see my old family doctor, the man that delivered me over 30 years earlier. This is where the story gets to be a bit of a blur, where our story with Amelia’s CHD begins. Our doctor called in his colleague to have a listen to Amelia and before I knew it, we had an appointment to see the local pediatric cardiologist that same evening. He stayed behind that night to see us, his staff had already left for the day by the time we got in to see him and he gave us our initial diagnosis. Fortunately, he is also on staff at Sick Kids Hospital and booked an appointment for us to get down there that week as well. At less than a week old, we had an official diagnosis of DORV (Double Outlet Right Ventricle) with AVSD (Atrial Ventrical Septal Defect), and dysplastic mitral valve, among other complications. In other words, a whole lot of terms that meant nothing one day and absolutely everything the very next. I remember my husband saying to me during our initial stay in hospital that he never wanted to hear another acronym again.
We were provided information on every possible scenario concerning Amelia’s diagnosis and what our cardiologist thought was going to be the best route for her. There was never any doubt that we would leave her care in their very capable hands and trust them wholeheartedly. And so began Amelia’s fight for her life. She has experienced more surgeries and procedures and medical intervention than most people see in their lifetime, all by the time she was 3 1/2. We are two years past her last surgery now and she is doing well. She is doing very well, in fact, as I write this, we’re fighting over bed time, a normal kid thing, something I wasn’t sure we’d ever have the chance to experience with our baby.
I’m hoping that if you’re reading these stories and you’re new to the CHD community, you’ll get the feeling that you’re not alone in your fears, frustrations, sadness, joys, happiness. If you’re not new but a fellow heart parent, I hope you’ll get the same kind of sense of validation that I get when I read what others have written. What I want most of all, is to raise awareness (money would be nice too) for the CHD community. As parents, family, friends of CHD children, we all know the statistic of 1 in 100 children born have a CHD, now we need people who don’t know us or our children to know that too! I want resources to be available for our kids as they become adults living with repaired CHDs. I want to make things easier for them as they grow up and navigate through the healthcare system. As I stated above, Amelia is doing well and now I’m thinking of her future in a way I probably didn’t allow myself to think about early on, with much hope.