Riley's Story: Parent's Letter Project Transposition of the great arteries- Riley Nicole's parents

First let me tell you a little about my experience. My daughter was born full term with no foreseen problems. But when I had Riley, she was blue and not crying. They whisked her away only to come back empty handed saying that my daughter had a congenital heart defect. WHAT? I cannot tell you who I saw or what all went on for the following weeks. I was a basket case!

My child, my new-born beautiful daughter has a severe congenital heart defect (CHD) called transposition of the great arteries. She had her balloon catheterization about eight hours after birth and then we flew to Washington, DC, when she was three days old.

Richard Jonas, MD and his fellows came in and explained it all to me the best they could. One even drew me a picture. I was dealing with an issue that I really had no idea was such a big issue. Riley's oxygen began to drop so they moved her surgery up one day. I remember the pager going off telling me she is on the bypass; she is off the bypass; come to the surgical waiting room. I had only held my daughter maybe five full hours of her life and fed her maybe once. Dr. Jonas then walked in and told me she did great!

I can tell you I thank Children's National and Dr. Jonas in my prayers often. That year my faith got stronger, I learned so much about congenital heart defects, and my daughter who is just now one has taught me more about life that I have ever known. Hang in there, pray, and find support! God bless you and your family!!!

Sincerely,

Angela and Riley

Treatment Team

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