Rayna Schuh

In June of 2006 my husband Tim and I found out that our family would be blessed with the gift of baby. As you can imagine we were excited and anxiously awaiting that first Dr.’s appointment to hear our new baby’s heartbeat. We had no idea if our baby was a boy or girl. Nor, that the heartbeat we heard at that appointment was coming from a heart that had a critical congenital heart defect.

Rayna was born February 16, 2007. She was perfect, or so we thought. We took Rayna home and just thought she was a tiny little girl who tired easily and didn’t gain any weight. After many trips to the doctor we were reassured she was fine and I was a paranoid mom.

In the summer of 2010, Rayna was diagnosed with strep throat and the doctor heard a disturbing heart murmur. I thought, “Well, everyone has a heart murmur.” After some thought, we took her back 2 weeks later and requested that her heart be checked. Rayna’s little brother had a hole in his heart that we needed to check, and I had that “mom feeling” that something was not right. That appointment would become the beginning of our journey into the world of Congenital Heart Defects.

Rayna had many appointments to determine what her defect was. In September of 2010 she underwent a sedated MRI and we were told she has a heart defect known as Total Anomalous Pulmonary Venous Return -TAPVR – and a very large ASD or hole in her heart. Her defect is usually fatal if not detected in the first few weeks of life but she was 4 ½ years old. We were told that this is unheard of and left the hospital wondering and questioning everything we did. At one of her first cardiology appointments I had a doctor take my hand and look me in the eye saying, “Mom you did not do anything wrong to cause this. By the time you heard her heartbeat for the first time, her heart already had this defect.” These words still echo in my heart. On October 17, 2011 we set out for the hospital and it was the longest ride of my life. From the backseat my beautiful girl called for me and as I turned around and our eyes locked her words got me through the day: “Mommy today is the day they are going to fix my heart and I am going to feel all better.” We turned our beautiful girl over to an amazing team that afternoon. As they wheeled her away, the most wonderful nurse looked at my husband and I and said to us “I will protect as if she were my own.” 7 ½ hours later she kept that promise and we saw our little girl with tubes, needles and hoses everywhere, but she was out and doing well. The relief in my heart and mind was indescribable.

Rayna is now 6. She is stronger inside and out and continues to be our driving force to find the beauty in this world of heart defects and doctors appointments. As each appointment nears we still wait with excitement to hear her heartbeat, just like we did the first time.

Rayna’s heart is mended but we are forever changed. The sound of that heartbeat is priceless.

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