#HAWMC Day 13.
Tell us about a time when you felt marginalized or stigmatized by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did – what did you say or what would you have said to take back control and let them know they were out of line?
I am fortunate not to have experienced stigma because of my diagnosis of prolactinoma. But I do remember feeling inadequate about breastfeeding my babies. Prolactin is a hormone that stimulates breast milk production after childbirth. Nursing my baby would increase prolactin. I had a pituitary tumor that secreted excess prolactin. I was afraid that nursing would increase my prolactin levels further, in the setting of possible tumor growth during the pregnancy because I had to stop my bromocriptine.
I asked my neonatologist what to do. He too was unsure. And when I did a literature search, I found only one case report of a mother with prolactinoma successfully breastfeeding. I agreed then to breastfeed for a week, at least for the colostrum. Paradoxically, I also didn’t really have enough milk. Then, I resumed bromocriptine.
As expected, many well-wishers inquired about breastfeeding. I had to explain many times about what a prolactinoma was. Although everyone was nice about it, I felt somewhat guilty prioritizing my health over my infant’s nutrition. It also didn’t help when my second son developed an allergy to milk formula.
And then there’s what my husband calls, the butterfly story. Because I had a C-section, my son had to stay in the nursery and was not directly roomed in. As I didn’t have milk yet and because no milk formula was allowed, they had given him glucose (sugar) solution. I received a call from the nursery asking if I was amenable to having breast milk from someone else be given. I then inquired what they had given him in the meantime. When I learned about the sugar water, I was upset and blurted out, My son is NOT a butterfly! I asked the nursery to bring my son to me immediately for rooming in.
I did a Pubmed search now for breastfeeding and prolactinoma, and I still can’t find anything beyond that case report.
Fast forward years later, my sons are thriving despite having been breastfed only briefly. They are the joy of my life!