In July 2017 during a routine ultrasound, we learned that our daughter had a sacrococcygeal teratoma (SCT), a germ cell tumor growing from her tailbone. SCTs are very rare and can cause major complications. The diagnosis was very scary and we soon learned that her SCT was particularly aggressive and vascular, putting strain on her heart and threatening her life very early on.

Luckily, we were referred to Midwest Fetal Care Center where we met an amazing team who took extraordinary measures and ultimately saved our daughter’s life. I was monitored very closely by the team and they very quickly made a plan to intervene, knowing she would not survive without it. So at just under 24 weeks of pregnancy, we underwent open fetal surgery to debulk the tumor, which by that point was about the size of the baby. The odds were not good but we had great confidence in the team and their expertise. 

The surgery was successful and everyone took excellent care of us and kept close watch on me and the baby while I remained in the hospital on bed rest for the next 5 weeks until she was born, at 29 weeks. After an 83 day NICU stay and a few additional surgeries, our beautiful daughter, Alexa, is now home with us. She still has a long road ahead of her as she fights through issues related to the SCT and her prematurity, but thanks to Children’s she is progressing and expected to have an excellent quality of life.

Without the incredible skill, kindness and reassurance of the wonderful group of people at Midwest Fetal Care Center, we would never have had the joy of adding Alexa to our family. We are so grateful for our little miracle and the Midwest Fetal Care Center.