Re: thanatophoric dwarfism?
I'm so sorry. I work with babies that were told they were going to die and they are still alive. I have seen them come home on hospice and were given a short amount of time to live. A year or so later they are off the vent and trach is taken out. God is the only one that knows. I will be praying for you during this hard time.
mama to my boys. L 8/07 and W 1/11