Hi and thank you for sharing your story. I'm sorry for what you and your baby are going through. It must be an emotional, overwhelming time. I don't have experience with birth defects, but my daughter was born at 25 weeks, suffered a severe brain hemorrhage and many other complications, and for a long time we didn't know if she would ever walk or talk or sing until she did. She is now 5 and thriving beautifully, with the help of wonderful doctors, nurses, and Early Intervention therapists along the way. I hope you find the resources that are right for you. Please know that, as rare as your baby's condition might be, others have been through similar journeys and are ready to support you through yours. Sending hugs and best wishes!