We found out we were pregnant in July of 2016. We had two other sons and eagerly awaited our 20-week ultrasound in October. We hadn’t done a gender reveal with either of our other children and had planned a football-themed reveal for after practice with our eldest son’s team (dad was a coach on the team). All four of us set out on the morning of October 27 and headed with excitement to the ultrasound at SSM Health St. Joseph Hospital West. We had plans to make a fun family day of it, get lunch and pick up items for the reveal party; however, the day didn’t go quite like that. At the end of the ultrasound the tech said she needed to review things with the doctor. She returned promptly with the ultrasound images and instructions to go immediately to SSM Health St. Mary’s Hospital, where staff would be waiting for us. We got in the car and took what seemed to be the longest ride of our life.
At SSM Health St. Mary’s we were checked in promptly. Our hearts sank, as we sat in large and dark ultrasound room, and watched as a large group of specialists walked in. We were offered a counselor to take the boys out of the room so that they could speak to us privately. Our hearts dropped again. A large amount of fluid was evident on the baby’s brain as well as some mild fluid on the kidneys and some bright spots on the heart. We were told that quite a few physiological signs pointed to Downs Syndrome as a best bet, but it could also be another trisomy disorder that had a very likely possibility of being fatal. An amniocentesis was recommended to get a possible genetic diagnosis and we were given time to discuss and digest all the information that had been given to us. We took our time, collected our fragile emotions and shattered hearts, and had the amniocentesis done. We were told she was a girl, but we had no idea what was wrong or if we would even bring her home. I was crushed. Telling our sons was the hardest thing ever, right next to keeping ourselves as “happy” as possible over the next four long days. We did our best to keep busy as we awaited the first round of genetic testing and input from other specialists. We were told we would be meeting with the Director of the St. Louis Fetal Care Institute (FCI) at SSM Health Cardinal Glennon Children’s Hospital.
At our first visit at the FCI we did an ultrasound as well as an echocardiogram to take a better look at the potential bright spots on Reagan’s heart. Genetic testing had revealed that all trisomy tests were normal. Her heart tests that day were normal as well. The large concern was the fluid in the brain because all four of Reagan’s ventricles were heavily dilated. The initial diagnosis suspected was Blake’s Pouch Cyst, which is a cyst blocking the fourth ventricle from draining properly and causing a defect known as Hydrocephalus. In Reagan’s case, it was severe.
For the next 16 weeks we were regular visitors at the FCI and I was monitored quite regularly to keep an on eye on Miss Reagan. There are countless “little things” that made big impact during that time. Nurse Kate helped schedule all the appointments, which made it far easier for me to simply focus on Reagan. Because the FCI arranged for us to meet specialists ahead of time, we were prepared with a “road map” of how everything would go after Reagan’s birth. We met our Neurosurgery Nurse Practitioner Anne, who subsequently recognized our nervous faces as we arrived at the hospital the day after Reagan’s birth, anxiously preparing for her ventriculoperitoneal (VP) shunt surgery. She could see the look on my face as I helplessly sat in a wheelchair and she assured us not to be worried and that we could see her and talk to the surgeon before surgery. Even after Reagan’s birth, I remember being on a pass from SSM Health St Mary’s to visit Reagan in the NICU. During my visit, Kate called me in the NICU, offering me the option to have my postpartum maternal-fetal medicine check in the FCI in case it was hard to get in to see my specialist at his SSM Health St. Mary’s office.
When the staff encouraged us to call for anything, they genuinely meant it. No one ever made us feel as if our opinion or feelings didn’t matter, and our questions were always dignified and answered. My husband and I literally cannot imagine having gone through it all without being under the care of the whole team of the FCI.
We are so thankful and fortunate for the care our daughter has received thus far at SSM Health Cardinal Glennon. We really think of everyone as an extension of our family; and it all started at the FCI. Everyone at the FCI goes above and beyond, genuinely cares and are truly dedicated to prenatal medicine and families. We cannot thank them enough and they will never be forgotten by us.
So far, Reagan is thriving! We had no idea where to go or what to expect with her development as her brain was greatly impacted by the fluid. We do know that she’s such a blessing. We have learned to just cherish every little thing with her. Our experience has even made us appreciate our boys more than we did before.
We love SSM Health Cardinal Glennon and cannot say enough wonderful things about the care we received from multiple departments of the hospital. This journey with our baby didn’t go as we had planned, but that’s life and we embrace it. We couldn’t imagine her being cared for at any other place. The facilities and specialties at the hospital are a Godsend and we feel blessed to live so close to such a wonderful facility.
– Sara Hageman, Reagan’s Mother