Hello my name is Andrea, my sister Autumnn and brother in law Cody just had a beautiful baby girl named Lucinda February 11th. This is their first and only child together, and has been a whirlwind of emotions since they found out right before their 5 month visit that Lucinda was diagnosed Spina Bifida Myelomeningocele, which is one of the most common but most severe types of Spina Bifida. From that visit on things just seemed to get worse due to the severity of her condition. They were told she would more then likely be wheelchair bound, and have to use enemas and be cathed her entire life. They were told she may have a clubbed foot (luckily just looks like a minor defect on her left foot) and that she has Spina Bifida Myelomeningocele, her defect was from her t-11 vertebrae to her sacrum which was much more than the doctors saw on imaging. They were also informed that she had a 100 degree curvature Kyphosis at defect as well as Chiari 2 Malformation.
She had her first surgery at 2 days old lasting 7 hours. She is such a strong girl but there is more to come. She has Hydrocephalus that is currently being monitored and will likely need to have a shunt in the near future to drain excess fluid. Her Spina Bifida and Kyphosis were so severe, that the doctor had not seen anything like it, and plans to write a medical journal on his surgery with her. But this is just the beginning for her, she is looking to have several more surgeries as she grows as well as physical therapy etc.
Unfortunately, because of round-the-clock care Autumnn will not be able to go back to work as she will need to be there for baby Lucinda and all her needs. While Cody will have to take time off from work for important tests, doctor's visits, and time off when the surgeries are performed. They have bills and expenses mounting up, and this is only the beginning.
Any help would be greatly, greatly appreciated!
