DIAGNOSIS: Hypoplasia of Aortic Arch, Coarctation of Aorta (preductal) (postductal), Hydronephrosis-bilateral, Double Outlet of the Right Ventrical, Transposition of Great Arteries, and VSD.
My Raeleigh was born 6 weeks early, and her tiny body had big problems. She was born with hypoplasia of the aortic arch, coarctation of the aorta, hydronephrosis-bilateral, double outlet of the right ventricle, transposition of great arteries, and VSD. To compound this, her premature arrival, which in and of itself has its own set of difficulties, added right-sided vesicoureteral reflux grade 2 to her list of problems.
All a mother wants to do when they give birth is hold their baby. I however, did not get to touch my baby girl until she was three days old. The moment she was born, she was whisked away and started on medications to keep her alive. However, my heart sank when the doctor informed me that the medication would only sustain her for days and that a more severe intervention was needed. Four days after she was born, she underwent her first operation. Though it was successful, we knew it was only the beginning of a long journey to keep her alive.
At one year old, when most parents would be planning their children’s first birthday party, we were planning her second surgery. She would go on to need two more, one at three years old, which was complicated by the scars left behind from her previous operations. Because of her anatomy, the surgeon could not complete the planned operation, and a year later, at age four, was finally able to undergo a modified Fontan. Almost four years later, I am happy to report she is doing well! She has to limit herself when she plays sports but he has found her normal and is thriving. Though we do not know what the future holds, I know my fighter will face whatever comes her way.