Bernadette's story

I want to speak on how behind the medical community is in comparison to the parent community when it comes to DS. 

Bernadette was a birth diagnosis. She had a very traumatic birth, after watching the doctor revive Bernadette he came over to explain everything that had happened, and what might happen depending on test results, and then he said “it appears that she has Down Syndrome.”  I think if she hadn’t had such a traumatic birth that the DS diagnosis would have been more shocking or devastating. But it took me a few min to process it and to have my sad moments. But I processed it very quickly because I didn’t care if she had DS, I just cared that she was alive. 

Bernadette got moved to the more intense side of the NICU, on that side she had one doctor throughout the whole week vs a different doctor every day on the less intense side.  We loved this doctor, she was friendly and would listen to us. She always delivered information in a kind tone with a positive spin on things. We felt safe with her taking care of Bernadette. On day three of life she came to my room and had a very serious look on her face. I was worried, was something wrong with Bernadette, why was this Doctor acting so serious? “The results came back.” Oh my goodness my heart dropped. We were waiting for blood results from her white blood cell count, she needed a transfusion the day before because her count was so low, did the transfusion not work? Was she going to need another one?  “She does have Down Syndrome.” She was so sad in her delivery. This woman knew us and knew our personalities. She knew we were fine with a DS diagnosis, so why the negative and sad tone. I looked at her and said “I know, but what about her blood work, how is that?” 

The medical field is so far behind the parent community. DS is not a death sentence. It is a blessing. There have been so many stories other moms have told me about Doctors offering termination first, and multiple times. There are so many doors out there in the DS community. Doctors need to realize the blessing our babies are. Sure it’s a struggle on some days. But it makes the other days a million times better. Bernadette is the light of my life and has changed me and everyone she meets for the better. I can’t imagine my life without her.