New Diagnosis/Prognosis

On Friday, October 3rd I received a call from the NICU. They indicated that Dr. Ward (head of the Neonatal group), Dr Boto (Geneticist), and Dr Eller (my great OB) wanted to come over to visit with us that afternoon and would like to make sure that both my Husband and I could be there. They said that they had gotten the test results back and wanted to discuss them with us and tell us what they had found regarding a new diagnosis. (They had been performing many tests on Bailey to determine exactly what she did have since there was obviously a problem - although it wasn't OI.)

I will be honest - I had a horrible feeling about it. However, I was trying to be so positive. After all, everything had been going so much better than expected so far. Right?

I called Chris to make sure that he could be back to the Hospital by 3 PM because he had just barely left to go and take Parker home from visiting his Sister. The plan was for him to take Parker to his work to show his friends some pictures of Bailey, then take him to football practice and spend some time with him that evening but we would just have to work something else out. I needed Chris to be with me for this.


Well, the time came. The Doctors came. It was bad news from the start. Dr. Ward started by saying "Well, yesterday you gave me the name of 'Dr Doom and Gloom' and, unfortunately, I am here to be that again today." We knew then it wasn't good news. They then proceeded to tell us that the new diagnosis for our sweet Bailey was Thanatophoric Dysplasia. They explained to us that nobody ever survived this disease and that the best thing for Bailey was for us to make the decision as to when we would take her off of her respirator. They then gave us some documentation on the disease that we could read and asked us if we had any questions.

What do we say? We had never heard of this disease ... we had no idea that this was coming ... and what happened to our hopes and our happiness that she had been doing so much better than had been expected? What happened to the positive feeling we had because she didn't have OI? Of course we had questions - but, right now, we had no idea what they were.


(NOTE: I have to put a note in here regarding Dr. Ward. Although Chris jokingly nicknamed him "Dr Doom and Gloom" he is an incredible man. Yes, he had to deliver us bad news. However, he helped us understand what was best for our little girl. He gave us the news as soon as he knew it. He didn't prolong things. He gave us news as he had it. What an awesome man! As Chris told him .. "his job just sucks".)


The Doctors told us to think about when we might want to remove Bailey's tubes and not to rush any decision. They said that there was no rush and that Bailey was being kept out of pain and comfortable and would continue to be until we made our decision.

We talked about it that afternoon and decided that we would wait until the next evening so that we would have the day to spend with her and time for family and close friends to come and see her while she was still alive. It was also very important to us that we had the opportunity to give her a blessing.


We had another incredible support - Mary, the Social Worker that worked in the NICU at the Hospital. She came in to talk to us and helped us SO MUCH! She was there with us the entire way - from the moment we were delivered the bad news until the moment Bailey took her last breath and we left her to return to our room. What another INCREDIBLE PERSON! I don't know what we would have done without her. Not only was she there as a support to us but she helped SO MUCH with our boys as we were saying our goodbyes to little Bailey. There were so many times when I felt I needed someone and it was Mary that I was asking Chris to find.