The Fetal Care Institute - My First Appointment

After being diagnosed, I was referred on to The Fetal Care Institute (FCI) at Cardinal Glennon Children’s Medical Center.   They contacted me and set up 2 days of appointments.  The first day consisted of a fetal MRI.  The second day was jam packed with appointments which included:  another upper level ultrasound, meeting with a geneticist, meeting with a Footprints Specialist (type of counselor at the hospital), the maternal-fetal specialist (Dr. Vlastos), and the pediatric surgeon (Dr. Yang).    My husband and I were very overwhelmed with all the information (to be expected), but overall the day went very smoothly.  At the FCI, they coordinated everything to run very smoothly from appointment to appointment.  We even squeezed in a tour of the NICU.

After the upper level ultrasound/fetal MRI results were compiled, we met again with Dr. Yang.   It appeared the entire stomach and some intestines were in the chest cavity.  These organs were then pushing the baby’s heart to the right side of this chest, and, most importantly, getting in the way of the baby’s lung development.  CDH babies run into the majority of their problems due to the underdevelopment of the lungs.  It never gets any easier having to hear this information, much less see it on the ultrasound screen.  The main thing we are looking for between now and my next appointment is improvement in the development of the lungs.  They are much smaller than they should be at this point in my pregnancy, but we just need to see they are improving to some degree.

At my next appointments, I will be having another upper level ultrasound (these become pretty routine obviously) to check on the lung development and an echocardiogram (hope I have this one right), which will check out the current condition of the baby’s heart.