When did you start to get involved with the Congenital Heart Alliance of Cincinnati?

We just attended our first CHAoC event and will be a part of it from now on as long as we can!

Can you share with us your heart hero journey? 

Our daughter Scarlett was diagnosed with Complete Heart Block April of 2017. Children with CHB are usually diagnosed at 20weeks in utero but my pregnancy was normal and healthy until I had severe heart burn and a migraine. I told my doctor something was seriously wrong I needed to go to the hospital. When they checked the fetal HR it was 50, when it had been 155, 3 days prior. We had an emergency C section and Scarlett was taken to Cincinnati Children’s Hospital immediately. My doctor asked how I was feeling and I realized my headache and chest pain were gone, he said I don’t think we were here for you I think we were here for her. We were so blessed that God placed us where we needed to be to get Scarlett help immediately. I’m forever grateful for our Savior for protecting her. She did well until 18 months when she had to have open heart surgery and a pacemaker placed. It’s been a roller coaster for us all but she has always been a ray of sunshine. She just has something special about her, as most heart babies do. She’s done so well and now as a 7yr old going into 2nd grade we could not be more proud! We are grateful for the heart community and Cincinnati children’s hospital who has taken such great care of our daughter.

What is your favorite way to connect with the Heart Community? Are there events that you have attended recently that you have enjoyed?

As an RN myself I know that support is so so important to patients and their families. So I try and be a listening ear and supportive to anyone I know going through this Heart journey with their child. We recently signed up for the Scratch Golf golf camp and we are thrilled that we did. I saw my daughter talking with a new friend she made on a break. They showed each other their chest scars and when the other little girl said “I have a pacemaker too!”…Seeing my daughter shocked and say” you do really?!”…I immediately teared up. She had never met another child with a pacer or a heart surgery scar. It was such an amazing moment to watch and it made me realize how important these kind of events are for our children. She’s talked about it almost every day since and can’t wait to do lessons next month! I cannot thank CHAoC enough for this event. For the kindness theyve shown and the fun my family has had. It was a great way for her father and I to connect with her and other parents who just get it. They just know exactly what we’ve gone through and will continue to go through.

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?

It’s a roller coaster. It’s not how you imagine the birth of your child going but they were chosen for this moment. Children are SO resilient and strong. Lean on family and friends. Seek out resources as there are SO many for support through the battles you’ll face. Stay off Google it’ll make you go crazy. It’s okay to cry, it’s okay to be angry, but Never lose hope. Never. There’s many days I questioned God’s plan for my daughter because we don’t always understand, but I never lost hope. You have a Heart Warrior now. Your family can do this.

What is your favorite summer activity you like to do with your family?

Every year we go to Topsail Island North Carolina. My husband’s family has gone since he was a child and now we take our children. It’s a time of reconnecting as a family. Taking in the beauty of this world. Walking the beach finding shark teeth, hearing the children laugh and play, listening to the waves. Disconnecting from our phones and social media and just focusing on the most important thing, family.

 

Are there any quotes or mantras that you live by?

“For God has not given us a spirit of fear, but of power and of love and of a sound mind” (2 Timothy 1:7)

Are there any ways that you are looking to get more involved with the Heart community?

My husband and I have been talking about volunteering and giving other families the love and support we have felt through our journey.