Here is a journey of a strong little girl! Rhyann was diagnosed with Trisomy 21 (Down Syndrome) at birth. The next day she started turning blue. She was heart flighted to a hospital were she was admitted to the NICU. There they ran many tests to check her heart. She was diagnosed with a complete AV canal defect (holes in her heart). She is also Right Ventricle dominate (HLHS Hypoplastic Left Heart Syndrome) which means her left ventricle (left side of her heart) never developed as it was supposed to and is very small so she is working on half of a heart….a rare and life threatening heart disease.
We were told she may only live to be one to two years old and surgery could be fatal. Most parents choose the comfort method where they simply love their child until she passes away. Or we could choose surgery which may or may not give her a longer life. We chose surgery to give her every fighting chance! There are only a few surgeons that will touch Rhyann’s heart and that is why we will be going back and forth to Boston Children’s Hospital to have all of Rhyann’s surgeries. Our local hospital is unable to perform the surgery Rhyann would need to live. So far she has had two surgeries. Her first heart surgery was a pulmonary band placed on her pulmonary artery to help slow the blood flow getting to her lungs. Her next surgery was a g-tube to help her gain weight and grow as we where told she would not grow very much. Her next surgery will hopefully not be for a while.
We have to take Rhyann to many appointments and we live 50 miles out of town. It is wonderful to have her therapy in the home! Rhyann is just a little over one and she can sit on her own, roll to where she wants to be, eat food and play with her older sister. Thank you Elks for providing such a unique and great program!