On October 4, 2017 we welcomed a beautiful baby boy into the world. After an easy, complication free pregnancy and delivery we spent the whole day enjoying our new addition. 8 hours later, a very amazing nurse took him away from us for a bath and never brought him back. She noticed Ben's oxygen level was low and brought him down to the NICU for observation. After 2 roller coaster days in the NICU of watching oxygen levels, and the doctors trying to figure out what was causing the low oxygen, they decided to check his heart. They walked into the NICU with the results and told us to sit. Our whole world changed. Ben was diagnosed with TAPVR -Total Anomalous Pulmonary Vein Return. 1 in 10,000 children are diagnosed with this heart defect. This meant that his pulmonary veins were not going to the left atrium of his heart. Instead, the veins were going to confluence (sac) that his body had created.
I don't remember exactly what the doctor said. I remember feeling like I was going to pass out. "Heart defect.". "Critical." "Rare." "CHOP" "Open heart surgery." "Helicopter." "Right now." The drive to CHOP was a blur as my little new born baby was being flown above with a medical team in the helicopter.
3 days later, the amazing, heroic, unbelievable cardiac team at CHOP opened his tiny chest and worked on his almond heart. The surgeon nicknamed his BIG BEN for his strong willingness to live. 4 long hours of waiting, Ben was finally out and all fixed. I owe CHOP and their amazing surgical team my life.
And here we are, Big Ben will be 2 in October, he finished his recent cardiac appointment with all signs showing a normal heart with a beautiful repair. He will continue to just have one routine cardiologist appointment for the rest of his life, if all goes well! He is resilient, he is brave, he is a warrior and has a zipper shaped scar down his chest to prove it.
We will be walking as TEAM BIG BEN with the Congenital Heart Defect Coalition on Sunday, September 29, 2019. Their mission is to support families impacted by a congenital heart defect. The annual CHD awareness walk brings families together to celebrate and honor our heart warriors. We would love for you to walk with us this year. If you are unable to join us, please consider donating to this important cause. No donation is too small! Congenital heart defects are the #1 birth defect worldwide and is the leading cause of all infant deaths in the United States. Nearly 1 in 100 babies are born with a CHD. Research is greatly underfunded but with your help we can bring much needed awareness and fund groundbreaking research to help improve and extend the lives of those born with a Congenital Heart Defect.
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