Having Congenital Heart Disease

I was born on June 26, 1993. On July 2, 1993, I had my first open heart surgery. I was born with congenital heart disease. I found an awesome description of congenital heart disease on Heart & Stroke Foundation of Canada’s website:

Congenital heart disease occurs at birth. A congenital heart defect happens when the heart or the blood vessels near the heart don't develop normally 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 (measles), certain inherited conditions such as Down Syndrome, or drug or alcohol abuse during pregnancy.

Thanks to outstanding medical advances in Canada and around the world, survival of children with congenital heart disease has greatly improved. Sixty years ago, less than 20% of infants born with complex heart defects reached adulthood. Today, more than 90% do, including those with complex congenital heart defects. Better quality of adult care can help them to avoid or manage complications and live life to its fullest.

(Source; click here if you would like to donate to the Heart & Stroke Foundation of Canada. Every penny counts!)

Since I can remember, I find that people have either pitied me, stared at my scar for uncomfortable amounts of time or said things like “I don’t know how you do it!” Here’s the thing: I’ve never lived a life without my scar, surgeries and regular cardiac appointments. Therefore, I don’t know what it’s like to be the textbook version of healthy.

That means that after 4 open heart surgeries, 8 catheterizations, 1 case (and 1-almost case) of endocarditis and a heck of a lot of doctor’s appointments; I can’t tell you what my life would be like without a CHD. That’s how I do it.

I was born with transposition of the great arteries. That means the position of my pulmonary artery and aorta are reversed. I also have ventricular septal defect, which is when you’re born with holes between the lower chambers. Funny thing is, everyone always says to me “oh, my *insert family members* was born with a hole in their heart; I get what you’re going through”. The holes in my heart are what kept me alive until my first open heart surgery, as they allowed for blood flow through my heart.

This past Monday, I had the pleasure of going to Toronto for my annual cardiology appointment. I absolutely adore my current cardiologist, Dr. Rachel Wald in the Adult Congenital Heart Disease clinic at Toronto General Hospital. Dr. Wald was early for my appointment, which anyone who knows Canadian healthcare knows that this is super rare. This meant that I had more time to talk to her about my life, both cardiac-related and personal. She always reiterates to me that she sees thousands of patients annually, but my case always stands out to her due to the procedures I’ve had. My first appointment with her, the first thing she said to me was: “oh my goodness, I had the pleasure of reviewing your MRI in the spring and it’s amazing to see how someone with that complex of heart disease can look so healthy! Your heart was one of the coolest I’ve ever seen.”

On Monday, Dr. Wald and I talked about the length between the procedures on my heart. 1993, 1994, 1996, 1997, 2001, 2006, 2008 and 2010; plus endocarditis in 2005. Some years, I’ve had more than one procedure that year. We were talking about how it’s been six years since my last open heart surgery, which is the longest I’ve gone without a procedure. Currently, my goal is to make it ten years and a day without a procedure so I can qualify for life insurance. That means I have to make it until May 11, 2020.

Since May 10, 2010, I have treated my life as a second chance. My heart was stuck to my chest wall and they didn’t notice it in my CT scan. As a result, my heart quite literally exploded on the table when they cut it open and I was rushed onto bypass. The first 24 hours post-op was very touch and go as well, they started preparing my parents that I may have to be rushed into the cath lab at any time and that I could wake up with brain damage or a physical disability. I woke up just fine and am eternally grateful for the team at Sick Kids hospital in Toronto.

Since May 10, 2010, I have been able to accomplish so much and have an awesome adulthood. I have been able to…

 

Graduate college, twice!

Become an aunt, for the second time!

... and have the pleasure of watching both my nieces grow up.

Adopt these two crazy fur babies, aka my boys

Break my first bone

Become a godparent for the first time!

Break all the rules and get a piercing in a high infection location. Oops.

Buy my first car!

Get in my first not-at-fault accident

... and my first at-fault accident

Successfully lose weight and keep the weight off

Snipe pre-release tickets to the movie and then spend hours in line! Deadpool was my first movie to do this for.

Develop new relationships and embrace old friendships to find a group of people who I know always have my back, no matter what.

Fall back in love with my mama, my #1 supporter and the person who's been through it all with me. I'm one lucky girl to have her.

Become close with my dad again and be there to support him through a stroke and there to celebrate his 30 years sober (all while he distracts me from needles by shoving his nasty fingers into my ears).

What I’m trying to say is: yes, congenital heart disease sucks. It’s painful, scary and overwhelming at times. There are going to be bad days, there are going to be freaking terrible days. However, the good days outnumber the bad. I’ve spent the last 23 years surrounded by constant love and support from my family, friends and medical professionals.

If you’re a parent of a child who’s just been diagnosed with CHD: it’s going be okay. It’s 100% okay to be scared, overwhelmed and even heartbroken. However, this isn’t your fault; you did nothing to cause this! Embrace the milestones in your child’s life, they’ll remember. Be there to love and support them through the difficult times, they’ll remember that too. If you’re ever feeling overwhelmed or there’s something you can’t handle, take a step back and let someone else step in. I know that my mom can’t handle when I get an IV or my chest tubes removed, so she takes a step back and lets my dad and sister step in.

I’m at a point in my life where I embrace my relationship with my family, because I know how strong of a bond I have with them. If it wasn’t for their love, support and days spent at my bedside, I wouldn’t be here.

If anyone takes anything for this post, I want you to know that everything happens for a reason. That reason usually is to make you a stronger person.

I’ll end this post with a Spotify playlist that I identify with a lot throughout my life with CHD.

I hope you have a fantastic day!