Shannon Smith (twobeauties) is a member of our Heart Disease Community here at WebMD, and she has agreed to share her story with others here on the WebMD Pulse. Shannon’s daughter, Sydnie, now six years old, was born with Congenital Heart Disease. She tells us how she and her family coped with the diagnosis and weathered the storm over the years to raise a healthy, happy child. Her tale is an inspiration to us all.
The Story of Sydnie
By Shannon Smith
We had gone for a routine Level II Ultrasound, where they found a spot on the ultrasound around [our baby’s] heart. The doctor came in and took a look, then told us it was most likely Down Syndrome or one of about a hundred birth defects. He turned to me and told me in a matter of fact tone, “You need to decide what you are going to do. I will give you a few minutes to decide.” I looked at my husband and started crying. There was no way I was going to terminate my pregnancy, birth defect or not.
When the doctor came back in, he asked what we planned to do and offered to give me a blood test for Down Syndrome, which I took. After talking it over with my ObGyn, I was sent to another doctor for a second Level II Ultrasound, where they also saw a spot, but ruled it out as a blip on the screen, not a birth defect, and told me everything was fine. For the rest of my pregnancy, I worried that my baby had Down Syndrome or some other birth defect, even though the blood test came back negative for Down Syndrome. We didn’t know anything was truly wrong, until we had her.
I found out that my daughter had something wrong with her heart the day she was born by c-section. The nurse brought her to my side, after checking her out and wrapping her in the hospital blanket, while I was on the operating table. I was not able to hold her, but I did get to look her over briefly. They took her back into the nursery and my husband went to be with her, while the doctor finished up with my surgery. After going back to my room, we waited for hours to see her and kept getting strange excuses from nurses and doctors as to why they had not released her back into my care.
After about five hours of waiting, my husband went downstairs to the cafeteria for lunch. A hospital pediatrician came into my room while I was alone, and told me that my baby was in critical condition and would not make it unless I approved her transportation to another hospital two counties away. She told me that there was something wrong with her heart and that they couldn’t get her oxygen levels normal. Once she upset me to the point that I was unable to breathe and crying uncontrollably, another nurse came in and removed the doctor to try and calm me down. The nurse called for my husband over the hospital intercom. When he came back, I could not find the words to explain what was going on, so the nurse kindly broke the news to him. He followed the ambulance later that afternoon, to the children’s hospital and stayed with her while they ran tests to diagnose her heart condition. It was determined that she had Hypoplastic Right Heart Syndrome(HRHS), Tricuspid Stenosis, and Pulmonary Stenosis. She would need open heart surgery as soon as possible.
The first days and weeks were horrible. I was a wreck and blamed myself for her condition, even though the doctors told me it wasn’t my fault. As her mother, the person who had carried her for nine months, I felt like I had failed her in the worst way. My mind kept circulating through all of the foods I’d eaten, medications I’d taken, places I’d been, etc. The mental and emotional torture within me was almost unbearable. We felt like we were all alone and that no one understood what we were dealing with.
In hindsight, I wish we had gone for a third opinion and she had been diagnosed prior to being born. I believe that knowledge is power, and that we would’ve been more prepared and able to deal better with her condition had we known ahead of time.
Read Part 2 of Sydnie’s Story, and find out how Sydnie’s condition and her treatment affected the rest of the family and what they did to cope. And, if you have your own story to share, we invite you to submit it to our community staff.