Day 29 of 30 Days of MD: Being a mother of twins and MD


by Danielle "Dani" Liptak |

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Day 29 of #30daysofMD Introducing Lauren! To begin to understand my relationship and past expectations of myself as a mother living with FSHD, you have to start with my own mother. My mother was a C5 quadriplegic. She did not suffer from FSHD. She was injured in a car accident her freshman year at the University of Oregon. My mother did not allow her handicap to get in her way. She went on to become a successful lawyer, mother, and wife, before she died in 1994. Prior to becoming pregnant with my twins (via IVF for genetic testing purposes) I was given a warning by the neurology department at Oregon Health and Sciences University. The warning: pregnancy would likely hasten the progression of my disease, to an unknown extent. Although a scary prospect, having children has always been my hearts greatest passion. So I began the IVF, with genetic testing process. My twins Carson and Sienna were born via emergency C-section just before Thanksgiving 2013. They 35 weeks, and teeny, but healthy. The neurologists had been spot on with their warning. I was so weak post pregnancy, I could barely walk stairs, was falling, and so worried of my weakness I didn’t dare stand while holding both babies. In addition to the rapid progression of the FSHD during pregnancy, I in my quest to do everything I could for my tiny babies, pushed myself way too hard. As my mother before me, I had a vision, and nothing was going to get in my way. My vision was a of the perfect start for Carson and Sienna. At first I had to feed the babies every 1.5 hours, and was pumping in between feeds to keep my milk flow up. As the babies grew in months, they ate less frequently, but I still woke in the evening to pump, and pumped throughout the day, as well as regular breast feeding, in order to keep my milk flow up. This, amongst all the other “perfectionist” actions I took, took away from my health. Although, I had gained back a fair amount of my pre-pregnancy strength 6+ months post pregnancy, **CONTINUED IN COMMENTS **

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