Friday night I got together with my friend, Sarah, to go over our presentation. Sarah is amazing, she wrote most of our presentation and really contributed so much with her experiences. She was very impressed by the pictures some of you sent! These images were an integral part of the presentation. I wanted everyone to leave with a picture of a baby with DS actually breastfeeding. Too many people don't think our babies will really be able to nurse. I think this can be a self fulfilling prophecy and I wanted to change the picture they may have had in their minds.
Saturday morning we spoke from 9 until noon on the impact of a Down syndrome diagnosis on breast feeding at the LLL of Western PA Area Conference. We explored both the emotional and the physical difficulties that can be encountered. It was an amazing morning. The women we spoke to had a lot of questions. I'm glad we were able to provide them with accurate information. There was even a genetic counselor in the audience! She fielded some of the technical prenatal diagnosis questions for us. I even asked her a question or two myself. There was a great discussion on the 90-92% termination rate of babies with a prenatal diagnosis of DS. That shocked everyone. During this part of the presentation were pictures of Sarah's daughter. I wanted to get past the image of a fetus and show the child with Down syndrome. I'm hoping it was subtle, yet effective.
We provided information about the various health issues that can be present, if they would affect breast feeding, and how breast feeding can help. We explained that a pumping mom is a breast feeding mom and really needs to be supported. My co-speaker brought up a great point about kids with immune system challenges and how to make meetings a friendly environment for them. One way is to have sick policies so they won't be exposed to a virus that could render their child ill for weeks.
I learned something. One of the women was a postpartum nurse at a well known women's hospital. She explained that babies with DS born at that hospital are sent to a separate floor. (Huh?) They don't want the mothers to see the typical babies and be sad. (What?) I found her later in the day and asked her if I had this right. Yes, they are not sent to the nursery on the postpartum floor. But, I'm still confused. I thought they had rooming in. I take Goldie to the DS clinic next month, maybe they can explain it better.
We ended up with almost double the people we had anticipated. Good thing I made two packets for each person. The packets included brochures for local and national resources and support agencies, general Down syndrome information and health care guidelines, information about heart conditions, breast feeding articles, people first language,the beautiful DSANV calendars and where to find even more information. DSRTF sent me a huge box of newsletters and DSAV sent some brochures. I'm still waiting to hear from the groups in western PA that I contacted.
The rest of the day was spent chasing Goldie around a hot stuffy hotel. Our weather has been a lot warmer than normal so the indoor poolside lunch was like eating in a sauna. While I drank a lot of water, Goldie was too busy to be bothered by drinking or nursing. I think she was dehydrated the next day, probably from sweating. Go me. Only I can bring a nursing toddler home from a breast feeding conference dehydrated. She's back to her signing dancing self now!
Oh, I almost forgot, well actually I did. The gift basket I put together daaaays ahead of time. I left it sitting in our enclosed porch where the