A Heart-to-heart Talk About Her Family’s CHD Journey
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Inspiration Spotlight
Meet Paige
When did you start to get involved with the Congenital Heart Alliance of Cincinnati?
I got involved with the CHAoC when after my son Levi’s second open-heart surgery in January of 2023.
Can you share with us your heart hero journey?
My heart journey started after my twins Levi and Lane were born. Levi was born with Dextrocardia, meaning his heart is in the right side of his chest (very rare), Transposition of the Great Arteries, a few VSDs (holes), Pulmonary Stenosis, and Superior-Inferior Ventricles. He has had 2 open-heart surgeries and 1 Cath procedure. After his second OHS, he was able to come off of room oxygen.
Lane was diagnosed a few days before their 1st birthday with an Idiopathic 2:1 AV Block. His pulse sits right around 57 and that’s his new “normal”. He may require a pacemaker if he begins showing symptoms or if his pulse gets any lower.
Both boys are THRIVING now thanks to research, technology, our amazing team at Cincinnati Children’s, and the giant village of the CHD Community!
What is your favorite way to connect with the Heart Community? Are there events that you have attended recently that you have enjoyed?
My favorite time of the year is Fall and I truly love being able to attend the pumpkin patch locations such as Burwinkel Farms! A close second would be zoo days and the Festival of Lights!
The heart community has been truly amazing!! From the heart walks, to the free events for heart families, to the gifts for the inpatient families, to being able to vent and listen, and everything in between. Funny story, I sell Scentsy along with someone named Jackie Crawford who is also in this group. She was buying Scentsy off of me one time when I noticed her profile picture said something about her son being a heart warrior. I messaged her and asked about her son’s diagnosis. Fast forward to my son Levi’s first open-heart surgery, Jackie drove all the way to Cincinnati Children’s with a giant box of snacks for us, stuffed animals for both Levi and his twin brother Lane, McDonald’s for us for dinner, outfits for the boys, a large DoorDash gift card, and tons of other goodies.
I barely knew her at this point. She told me how it’s nice to have a village to support you in those difficult times. Now Jackie and I are very close and I still can’t thank her enough for everything she did for us and continues to do for us! That’s just one example of how the heart community goes above and beyond to show their love and support for each other.
For new parents and family members just starting their journey with a CHD, do you have any advice for them that you would like to share?
I could go on and on about this. 1. Advocate for your child. You know what’s best for them. I know it’s scary and confusing at first, but feel free to ask questions. If something seems off in your child, alert the nurse. Fight for them and for you. Educate yourself if you can and really learn about your child’s diagnosis. 2. Reach out. It’s extremely traumatizing to go through this. Vent. We are all here to listen and can relate to your feelings. I still cry randomly just thinking about how far my son Levi has come. Happy and sad/scared tears are normal throughout this journey. We are all your village and would love to help you out!
What is your favorite summer activity you like to do with your family?
Swimming and eating ice cream!
