Updated & Revised: Having a Congenital Heart Disease

I wrote this article in July 2016, and it remains to be my most popular post to date. I thought that today I would re-write this article as I still strongly believe talking and advocating for myself and others is one of the best things I can do.

June 26, 1993 was the day that I was born. Within the first 24 hours, I had gone from being a healthy baby girl to being placed in a drug induced coma at Sick Kids Hospital in Toronto. By July 2, 1993, I had undergone my first open heart surgery. I was in the 1 in 100 statistic of a child born with congenital heart disease.

The Heart and Stroke Foundation of Canada defines a CHD as:

Congenital heart disease happens at birth. A congenital heart defect happens when the heart or the blood vessels near the heart don’t normally develop before birth. Congenital heart defects are present in about 1% of live births and are the most frequent congenital malformations in newborns. In most cases, there is no known cause. In other cases, causes may include viral infections such as rubella, certain inherited conditions such as Down Syndrome or drug or alcohol abuse during pregnancy.

(source)

Since July 2, 1993, I have undergone a total of four open heart surgeries, eight catheterizations and one case of endocarditis. I have lost a complete count of how many doctor’s appointments I’ve had or how much time I’ve spent in the hospital. When I was twenty one, I figured out that it was close to six months of my life in total.

In 2016, my cardiologist and I had a good conversation about my medical procedures. I had heart surgery in 1993, 1994, 1995, 1997, 2001, 2006, 2008 and 2010. I also had my endocarditis in 2005. Some years, I had more than one procedure that year.

I was born with transposition of the great arteries. In layman’s terms, two of my arteries (the pulmonary and aorta) were reversed. I also have ventricular septal defect, which is when you have holes in your lower chambers. This means that I’ve had the holes filled as well as my aorta and pulmonary valves replaced.

For as long as I can remember, people have either pitied me, made comments about how they couldn’t do what I have or stare my scar until I feel uncomfortable. Here’s the #1 thing I want people to know – I’ve never lived a life without my scar, surgeries or regular appointments. I don’t know what it’s like to be in your shoes. I wish I did, but I don’t know.

Currently, I’m at seven years surgery free. That’s a huge accomplishment for me because the longest prior to this was five, but I did have endocarditis in that stretch. My goal is to make it ten years and a day surgery free. That means I have to make it until May 11, 2020.

Since May 11, 2020 is my goal – that makes May 10, 2010 the date of my last open heart surgery. My last surgery was a lot complicated than expected, and I consider it my second chance at life. When I went into my procedure, they didn’t even intend to use a bypass machine. Unfortunately, a CT scan missed that my heart stuck to my chest wall. Therefore, my heart literally exploded on the table when they opened me up and I was rushed onto bypass. The first 24 hours post-op was very touch and go as well. The blood flow was going properly between my heart and brain. The doctors were preparing my parents that I may have to go back into the cath lab or that I may wake up with brain damage. I woke up okay, and the only downfall is that I get migraines now.

As I go into adulthood, I have become more thankful for all the experiences that I’ve had that have made me stronger.

Congenital heart disease sucks. It’s painful, scary and overwhelming. There are going to be bad days and there are going to be days even worse than that. However, the good days will almost always outnumber the bad.

I’m at a point in my life where I embrace my congenital heart disease. I don’t sit and let myself be pitied anymore. If it wasn’t for my CHD, I don’t believe that I would have the relationship that I do with my family. If it wasn’t for their love, support and days spent with me at the hospital; I wouldn’t be here today. I wouldn’t have been taught to be strong, to raise my voice and educate others on what a CHD truly is.

For the parents of kids with CHD:

It’s going to be alright. It’s okay to be scared, overwhelmed, heart broken and any other emotion you want to feel. However, this isn’t your fault – you did nothing to cause this. Embrace the milestones, your child will remember. Something even as small as staying with them and holding their hand while they get an IV is something they’ll remember.

Be there to love and support through the difficult times, they’ll remember that, too. Give them lots of hugs and kisses, hold their hand when they need you, wipe their tears even if you’re holding back your own.

If you know you can’t handle something, take a step back and let someone else step in. That’s what your support system is for. Have your child’s godparent, sibling, other parent or your family friend help them. They’ll remember that and be thankful as they get older.

(I still remember my godmom always coming to appointments and doing something that my mom would hate, like zipping off those zip-off pant/shorts from the 90’s, but it’s a memory)

Remember, everything happens for a reason. The reason usually is to make you a stronger person. Having a congenital heart disease makes you stronger, and being the family member of someone who has one makes you strong, too.

If you’re interested in donating to help people like me, the Heart and Stroke Foundation of Canada and the Sick Kids Foundation are both wonderful organizations.

To finish, I wanted to share three of my all-time favourite commercials. The first one is from their sick not weak campaign because it’s always been my mantra. The second and third ones are their dad strong and mom strong videos, because I know both my parents relate to the videos.