sharing information we learnt......
When born Your symptoms were heart problems, an undershot chin, low set ears, and rockerbottom feet that were gently curved upwards at both ends. It meant you would have feeding difficulties, there could be a lack of organs, infertility, and stiffness of limbs. Some tests would need to be done. What a lot of things. We were stunned.
In the first few days of your life a nurse was with you when we went in to spend time with you. She commented on how beautiful and perfect you looked. We were to stop being so worried about you. She felt you would be all right. She also needed to tell us there were a lot of things you would have difficulty with and not function well with. This nurse gave us so much hope and encouragement. We did not see her again. Later when we wanted to thank her we were unable to establish who she was and we believe she was an angel there for us in our time of need.
On taking Melissa home we were told not to let Melissa get cold and to keep your room at 15 degrees Celsius. She was to wear a woollen hat at all times. We were apprehensive. We were getting desperate and feeling frightened. We felt unsupported by the medical profession.
Knowing the expected outcome was death made everything feel worse. Worse than it probably was. We feared the worst, but we were not prepared to give in.
I will continue sharing our journey