CHD {How YOU Can Help}

So we’ve gotten a tentative date for Evanna’s first surgery, and though I don’t want to make the actual date public as there’s a possibility that it can change – I will say it’s closer to the end of September. Why may it change? Well first Nick and I approved to be added to the short notice list (so if there is a cancelation, we’ll get a phone call giving us as little as 24 hours’ notice to get up to Edmonton). Other reasons why the date can change can be due to another baby/child needing emergency surgery – so Evanna gets bumped, Evanna gets sick (so her surgery gets pushed back), or her condition steadily worsens and gets pushed up. So as you can see, even though we have a date, it can easily change.

As the date for Evanna’s first open heart surgery approaches, I have been getting a lot of people asking me what they can do to help, so I’ve thought about it and came up with a list:

+       Donate blood! Evanna hasn’t needed a transfusion yet, but I’m sure she’ll eventually need one and many more in the future. It’s such a simple thing to do, and only requires about an hour of your time. So what are you waiting for?

+       Are you a runner and enjoy marathons? How about a fun family walk? Live in Calgary? If so, you’re in luck! Every October the Calgary Heart Beats Children’s Society holds a Family Fun Run, with proceeds going directly to helping children born with congenital heart defects and their families. I can personally tell you that Nick and I have TWICE now received an envelope containing gas and grocery gift cards every time we’re required to go to Edmonton for a major procedure. Though this year we can’t participate because Evanna will be in the middle of recovery, I can’t wait to participate next year! Clink HERE for more information and to register.

+       Volunteer. Find the closest Ronald McDonald house, and find out how you can get involved! Whether it’s by donating some groceries, baked goods, or extra event tickets that you won’t use and another child and their family could enjoy (ie. hockey, football or baseball game). Gather a group of friends and family members and be a part of their “Home for Dinner” program by cooking up a meal for families currently staying there. This was probably our favourite thing about the Ronald McDonald house. Families staying at these houses are going through such a stressful time, and having a meal prepared makes such a difference – it enables the family to concentrate their time on getting their sick child healthy again. Once things settle down, our family plans on doing this on Evanna’s “heartiversary” for the Calgary Ronald McDonald house. I know most Ronald McDonald Houses have “Wish Lists”, and they specifically list items they need (and what they don’t need). Click here for Edmonton’s Wish List, and here for Calgary’s. I know I get readers from around the world, so don’t hesitate to look up what your local Ronald McDonald house is in need of!

+       Donate! CHD research is severely under-funded. In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. 

+       Organ Donation. Just at least think and ponder about it. There are so many babies and children waiting for a new heart, and knowing that this precious gift comes from a time of tragedy and sorrow for another family weighs heavily on them. Though Evanna can’t have heart transplant because of her type of defect, I still want to bring attention to organ donation because of how many heart families I know that would greatly benefit from it.

+       Educate yourself. Before I was pregnant with Evanna, I hadn’t heard much about congenital heart defects, nor how common they were (1 in 100 babies are born with a heart defect). Now I feel like every time I turn around, I meet someone who either has a heart defect or know someone who does. Learn the language. I might speak in acronyms like ECHO, CATH, ECG, etc It’s okay to ask me what they mean – or better yet – Google them.

+       If you are pregnant, or know someone who is – understand the importance of the detailed ultrasound (done usually around 18-20 weeks) and ask questions! Do you see 4 chambers? How about the blood flow? Etc.

Days leading up to our ultrasound, I was soo excited to find out if we were having a boy or girl, but the detailed ultrasound is so much more than that. Not all CHD’s are caught prenatally. I’ve meet a few heart moms who didn’t know their child had a CHD until after their baby was born and I am so glad that we had our detailed ultrasound done at one of the best diagnostic imaging facilities in Calgary with highly trained technicians. After your baby is born, watch for signs. Is a murmur heard? Are they breathing fast? Any retracting close to the ribcage? Are they having a hard time eating? Any bluing in the feet, hands or around the mouth? I am not trying to scare anyone, but if you think something is off or not right, share your concerns with your doctor!

+       Prayers. We’ve have seen the power of what fasting and praying can do – so really, that’s what we need the most. Don’t pray? That’s okay – we’ll accept positive thoughts too! Whatever it is that you do to help get through a tough situation, please send our way! 

+       We are not asking for handouts but I know there are some people who really want to know what they can do directly for our family. Honestly, because of our healthcare system (I will never complain about taxes again), this hasn’t been too much of a financial burden for our family. I may not go back to work in a fulltime capacity as quickly as I anticipated – but that’s okay, we’re fine with me going casual. Again, we just need your love, support and prayers!

Thanks for following along,

xo The Irvine Family