Welcome to Team Olivia's Personal Page!
Thank you for visiting Team Olivia's fundraising page for the Congenital Heart Walk! Raising funds for CHD research is critically important to all Heart Warriors and Heart Angels, and personally very meaningful to us and our very own Heart Warrior Olivia.
We found out the day that Olivia and her twin brother Noah were born on January 20, 2021 that she had aortic stenosis, which is narrowing of the aortic valve. This restricted the amount of oxygenated blood being pumped out to her body, and made her heart work harder. She had her first open heart surgery to fix the valve at Helen DeVos Children's Hospital (HDVCH) at 8 days old. They were only able to moderately improve the valve enough and she was able to come home at 15 days old. The aortic valve stenosis progressed, and she had to have her second open heart surgery at 4 months old. This surgery was done at the Cleveland Clinic and took her pulmonary valve and put it in the aortic location, and placed a donor valve in the pulmonary location (called the Ross Konnno procedure). We ended up going to Cleveland Clinic because it was a complex surgery that isn't super common, and the surgeon there had a lot more experience. Thankfully, that surgery was successful, and if you met Olivia today, you'd never know all that she's been through. We wish our story ended there, but Olivia will have to have both her aortic and pulmonary valves replaced at least one more time each. We hope the next surgery isn't needed for 5-10 years. In the meantime, she's our healthy, happy, feisty, precious Olivia! She loves dogs, smiling, playing peekaboo, giggling and taking toys away from her twin brother Noah. We are so thankful to be her parents!
We're also so incredibly thankful for the pediatric cardiologists, pediatric cardiac surgeons, nurses, echo techs, and all of the other healthcare staff at both HDVCH and Cleveland Clinic. They have done amazing things on such a tiny little heart and person, and we're in awe of their skill and expertise. We are also indescribably humbled and forever grateful for the donor valve that Olivia has in her pulmonary location. We know that it's only because of the irreplaceable loss of another kiddo that Olivia was able to have that gift. I'm equal parts in awe and thankfulness of the sacrifice, and absolutely
0..heartbroken for the loss that another family is enduring when I think about that special valve. Organ donation is an amazing way of continuing the legacy of a person by helping dozens of other people in need. If you're not an organ donor yet, please consider it!
While we're thankful for the advancements in CHD treatment, there is so much more to be done. 1 in 100 babies is born with a CHD, which makes it the number one birth defect. There are dozens of different types of CHD, and no known prevention or cure. CHD is a lifelong illness and twice as many kids die from CHD than all childhood cancers combined. In Olivia's case, there are limited options to deal with CHDs affecting valves. The valve replacement options available are not made for small kiddos, and most of the ones out there require the recipient to be on blood thinner for the rest of their lives. That comes with a whole other set of challenges, risks, monitoring, and worry when it comes to active kiddos and young adults. And that's just the tip of the iceberg for CHD. There are too many stories that end in heart replacement or death. I'm in a Heart Mom group online, and it's heartbreaking to see the posts that another Heart Warrior lost the fight and has become a Heart Angel.
I pray and have hope that we will see substantial advancements in CHD prevention and treatment in Olivia's lifetime. I hope that by the time one of her valves needs to be replaced, there will be better options. I also hope that those future surgeries may be able to be done in the cath lab instead of open heart, where there are more risks of immediate and long term complications. I have hope for these kiddos and the quality and longevity of their lives. I have hope, and I also want to take action. As a parent of a Heart Warrior, I know too well the gut wrenching fear that comes along with a CHD diagnosis. I also know how that can be directed into learning, advocating, and helping to make positive change.
Please consider helping us fund CHD research by making a donation to Team Olivia, joining us for the West Michigan Congenital Heart Walk on September 11, 2022, spreading awareness of CHD, or sending prayers or positive thoughts to all of the kids and families impacted by CHD. Together we can make a life-saving difference!
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