All,  Marcella's Story

Our Trip to CHOP Day 1

We packed up the car first thing on a Friday morning to head three and a half hours away to the world renown Children’s Hospital of Philadelphia. We had scheduled the fetal surgery evaluation to begin that Friday afternoon. It would be a two-day process of different tests; from MRI’s to Sonograms. We arrived in Philadelphia a little early, so mom and I decided that we were going to grab some lunch and explore a little bit after finding our hotel room. Little did we know that our hotel room was not a five-star suite, but it def was not what we thought it was going to be. Now whenever we talk about this trip, we always bring up the sketchy hotel room, with the view of a brick building out of the window. We went to see the liberty bell and all the tourist spots, got yelled at by a parking garage attendant about tipping him, we had an amazing lunch, and for that brief window life seemed normal and if I was just a girl spending a weekend away with her mom.

As it got closer to appointment time, my mind began to wonder about all of the different tests they would do, all the different monitors, people and doctors who I would have to talk to, and the realization that after this weekend, I would more then likely be scheduling an appointment days to a week later for fetal surgery on my baby girl. Fetal surgery- where the doctor literally does surgery on the baby while it is still in the mothers womb; absolutely mind blowing for a 19 year old, but here I was doing whatever it took for my baby to have a chance at a normal life.

            As we walked through the doors of CHOP, it was like you had just been transported into a medical safe haven. If there was something wrong with your child, this was were you would want them to be. Everyone was so nice, welcoming, and even though it was a children’s hospital with lots of sick little ones, it was also a place of family gathering. Most of the people you met had a good heart and made it feel as if we were all in it together. As we made our way around and eventually up to Neuro, I couldn’t help but feel scared. Here we were about to go through an extensive process to figure out if my baby girl needed fetal surgery. As I walked through the double doors, there was a small but decent size waiting room, and a few reception desks. I approached one, and with a shaky voice said, “Hi, I’m Kristen Brink and I had an appointment to begin the fetal surgery evaluation.” Instantly the girl replies with a smile, “oh yes, we were anticipating your arrival. Let’s get you all checked in. I need your insurance card and id; we have received all the other documents from your OB/GYN and St. Agnes.” I exhaled and thought to myself, maybe this won’t be as bad as I thought, everyone here seems nice, if it’s part of God’s plan for her to need fetal surgery then so be it. The receptionist finished up scanning in my documents, asked me to fill out a few papers, and once I returned the papers to her that a nurse would be out shortly to get me. I finished filling out the papers and turned them back into the nice receptionist; and so, began the waiting game.

            I swear we sat there for hours; I got up and paced the walkway looking at all the children they had helped, I looked through magazines, and then sat back down. In all honesty it was probably only a few minutes that we waited, but to me it was forever. Finally, an older lady appeared and called my name; she had a genuine smile and a friendly demeanor. We greeted each other and she asked us to follow her. She took us on a lovely tour of the Garbose family special deliver unit and it was absolutely breath taking, big private rooms, the nurses were friendly, and eased my worry a little more. As we finished the tour, we went down to the NICU to see where my sweet baby would be staying once she was born, since she was going to be born with spina bifida she would have to stay in the NICU. After the tours, she took us to go meet with all the different doctors; the neurologist, the plastic surgeon, and all the other team members that would be a part of fetal surgery and helping us through this. After meeting the doctors of who would do what, we sat down, and she finally explained the whole process of fetal surgery and the extensive tests that were part of the evaluation. The first test that needed to be done was the MRI. We were escorted down to the MRI lab, I was asked to change into a hospital robe, and then I would climb on to the MRI bed and it would begin. Once I was in the MRI tube, my anxiety began to kick in, the smallness of the tube compared to the roundness of my belly, as I lay there trying to control my breathing I hear my mom saying, “It’s okay honey, it’s going to be okay, just breathe.” You see the MRI wasn’t just done for me, but also to get higher resolution images of my baby girl. This MRI would assist doctors in correctly diagnosis the baby’s spina bifida and come to an informed decision about if she would need fetal surgery. This MRI went on for at least an hour as they did scan after scan, moved the bed a little this way and then moved it a little that way, close to the end I just remember closing my eyes and hearing the tech and my mom telling me to just breath that it was almost over. As I felt the bed begin to move, I opened my eyes and it was finally over; they said I could change back into my clothes and then someone would take me back up to where we started.

We made our way back upstairs and were greeted again by this same lady; I really wish I could remember her name, but I can’t. She explained that we were done testing for the day to go enjoy the rest of our evening and to be back at 8am tomorrow morning. Since we were done testing for the day, we went walking around and explored some more. We checked out the signers walk and the Eastern State Penitentiary. Once we were done exploring on our way back we grabbed some dinner, made our way back to that sketchy hotel room and enjoyed a night together as mother and daughter.