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CHD & Me

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CHD Awareness Week

February 7th-14th is Congenital Heart Defect Awareness week, and it’s given me a chance to reflect on our journey with CHD.

Having a child born with CHD (Congenital Heart Defect) is a huge part of any family’s life. We have tried so hard not to let it define her, or us, but it most certainly has shaped and influenced us all. In our house, it is not just my daughter who has CHD, our entire family {figuratively} has it. We are a CHD family, and here is what that means to me:

~ Let it go. The very first lesson we learned so early on is that we have absolutely no control over anything and we had to just take a deep breath and let go. Believe, trust, have faith and let go. It has served us so well not just in matters of health, but in all aspects of parenting. We have 2 girls that are active, full of attitude and like to push boundaries. We never wanted to hold them back, and our experience with CHD has helped us let them go, right from the beginning so they can find their own feet to crawl, walk, run and eventually fly away!

~ Inner {& Outer} Strength. Having a child with CHD means that all of us were forced to discover a strength that we never knew we had. There was no coddling our precious baby, we had to be strong for her, and in turn discovered just how strong she was in her own right. We have been amazed time and time again at how incredibly strong she is – not just on the inside going through the surgery, all the tests, pokes and procedures with grace, ease and peace – but on the outside as well. Despite her tiny frame and rough start, she is unbelievably physical; excelling in everything she tries. She loves gymnastics, hiking, snowboarding, skating, rock climbing, swimming and so much more. She has incredible strength and endurance and can run circles around us!

~ Community. When our daughter was born with CHD, I felt like we stumbled upon a secret community that I never knew existed! We have been incredibly blessed, not only for all the support we’ve received from friends, family and even complete strangers, but the amazing staff at BC Children’s Hospital, and the Children’s Heart Network. We have been able to meet new people and build great relationships at all the fantastic events that the CHN has hosted – waterpark fun days, Easter egg hunts, Christmas parties, Cirque de Soleil events and many others. They have great resources, have been an incredible partner on our CHD journey and we try and support them every chance we get!

~ Blessings. Ironically, this journey with CHD has made it clear just how blessed we are. I’m not just talking about all the love and support that we have received, although that certainly is much appreciated, but it has opened our eyes to just how much worse it could have been. Having spent a significant amount of time at Children’s Hospital we see children who have significantly more severe variations of CHD, and meet parents who’s children did not survive their diagnosis. In other wings and clinics we know there are children battling cancer, neurological disorders and much, much more. We are aware each and every day how lucky we are to have a happy and healthy girl!

~ Knowledge. Receiving the diagnosis was the beginning of an intensive education for us. We learned all about typical and atypical cardiac function, the workings of very many hospital procedures (CT scans, MRI’s, ECG’s, EEG’s, Echocardiograms, and various bodily fluid tests) and how to read and understand vital signs and the vast array of numbers that surrounded our baby at all times. We learned about medications for pain management, blood clots, seizures, sedation, and paralysis among others. The majority of this was an education we could have done without, but the silver lining was the opportunity for a long term education that has helped us understand our daughter and her needs much more intimately then we otherwise would have. Adri was part of a study that sought to understand the link between CHD, surgery and developmental delays. By participating in this study, she went through comprehensive testing each year that looked at her gross and fine motor skills, language, social, emotional, psychological and IQ development, as well as many other factors that made up just who she was. They gave us insight into our incredibly bright, advanced little girl and resources for dealing with a precocious, gifted child. As a parent, it was beyond helpful to have this validation, knowing I wasn’t some boastful mother who had an inflated opinion of her child. It also gave us time to thoughtfully plan out the best path for her education given this extra information we had.

Having lived and breathed CHD for over 5 years now, it is impossible to imagine what life would have been like without it, and I’m thankful for the lessons we’ve learned, the people we’ve met and the opportunities we’ve had.

For an in depth, detailed look at Adri’s story, check out my four part series here. As I said before, our journey would not have been the same without the the amazing people at Children’s Hospital and The Children’s Heart Network. Please consider supporting these great causes – you can donate to the BC Children’s Hospital here, and to the Children’s Heart Network here. Most importantly, support Heart Warriors like Adri and millions of other children fighting for their lives by giving blood!! 

8 Comments

  1. This is near to my heart as one of my good friends’ daughter was born with Tetralogy of Fallot. Sharing your story means so much to so many who are going through or will be growing through similar circumstances. I like how you have been able to see how this experience has shaped and molded you into the person/mother you are today. You are a strong and courageous woman!

    1. Thank you so much for your kind words! It always amazes me how many people have been affected by CHD, and that I still hear of new types of it every day, 5 years on! I hope your friends daughter is doing well!

  2. CHD is close to my own heart and a topic that I love bringing up to promote. Thanks for writing this post and continuing to share your daughters story and your positive support for BC Children’s Hospital. I think that the more people share their stories the more things can change. Do you follow Cora’s Story? So much good change has happened from that mama!

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