Our OBGYN told us that she would no longer be able to care for us as we are high risk and that we should look into an institution that provided cardiac surgery services. She explained that we should expect for George to need at a minimum one surgery upon birth and a 3-4 month stay in the NICU.

Rich and I would spend our days together at home. Every morning was a struggle as we’d wake up hoping it was all a dream. I would cry every day I woke up and thinking about anything else was impossible. Rich would stay up nights on end researching Marfans and Loeys-Dietz and everything that came with it. We had little to no interaction with the outside world. Our lives came to a full stop and we agreed to put our big wedding on hold. It was weeks and George’s name was not said, we were heartbroken. Eventually, Rich and I packed our bags and road tripped down to Maryland. We decided we needed to be get our acts together and be strong for George. I reminded myself and Rich that in life we’re given what we’re able to handle and I knew for a fact that this was something we could handle.

We switched our care completely over to Columbia as I had done my research on pediatric cardiac surgeons and high risk OBGYNs. It only seemed like it was the right thing to do for George. Tuesdays were long, exhausting and busy days where we’d spend 5-7 hours in the hospital getting ultrasounds, echoes and consultations. Eventually, it became the norm and Rich and I became well-versed in measurements, z-scores and CTD lingo. With every echo, we continued to see our baby’s heart vessels becoming larger and larger and the suspicion for CTD became greater. My heart sank every time a physician would start a sentence with, “So we had a conference about your baby this week and…” It felt as though our baby was an experiment because he was such an edge case. And even until this day, Rich will jokingly say, “Remember when I asked you what your biggest fear was and you told me it was for Georgie to have a really rare condition that doctors couldn’t figure out.”

On September 6th the phone rang and the first results were in —everything came back normal. We expected this as our blood work had all been normal up until this point, but it still relieved weight off our shoulders. We were still going into the hospital every Tuesday and at this point, I could constantly reassure Rich that I just KNEW that George was okay. Every ultrasound Rich would ask, “Do you see a clef lip, a club foot, scoliosis, any brain abnormalities, do his limbs and or fingers look really long?” He had done so much research about CTD that he knew what the markers were, but George wasn’t showing any of them. We were always told that he was a big baby due to the size of his head and abdomen.