Summer’s Medical Bills

Summer is currently in the NICU in Grand Rapids, MI. She is intubated and on a ventilator. She has a very long road ahead and will still need medical intervention and therapies once home. My husband and I are currently not working in order to spend as much time as we can with Summer.

Our Story: We had a very normal pregnancy until our 20 week anatomy scan where we were told that Summer’s legs and arms were measuring small. Our doctors couldn’t tell us anything more. We were then referred to a maternal fetal medicine (mfm) specialist in Grand Rapids. At our first appointment we didn’t know what to expect, we met with a genetic counselor and we were told that our baby had a rare genetic condition called Skeletal Dysplasia and it may be lethal. We were then taken to ultrasound and shown that her legs and arms were still small, measuring about 15-16 weeks, her skull was hypomineralized, and her ribs were short, angulated and possibly fractured. We were devastated and told we should terminate, as the chance of survival at birth was minimal. We completed an amniocentesis in order to complete genetic testing and determine the type of condition she has. We went back to the MFM a week later for an updated ultrasound, her arms and legs had still not grown and there appeared to be fractures on one of her long bones. In order to determine the lethality of her condition, we were shown multiple ratios of measurements, all of these measurements point towards lethality. After the appointment we had a few days to determine if we were going to continue the pregnancy or terminate. I immediately started researching, and actually found a mom on TikTok and she told me about a Facebook group for parents with babies with the suspected condition. We had decided to continue the pregnancy after speaking to many many parents of babies with same condition that were told basically the same things we were and their babies were thriving. After 3 long weeks, we received the genetic results back confirming Osteogenesis Imperfecta, a rare genetic condition that affects collagen production.