Pain is real. But so is hope.-Unknown
When my follow up appointment with my OB arrived, we were so heartbroken. We had just learned that our baby had a heart defect…and a rare one at that. After further research we learned that our baby would need open heart surgery after birth to correct DORV. I immediately asked my coworkers throwing my baby shower if it could be paused until after the birth. I would have hated to have a shower and receive wonderful gifts and never be able to use them should something happen. I asked the same from my mother.
My OB came into the room and we began discussing my request for referral to Texas Children’s hospital in Houston, TX. She said she had already called it in and that I should be getting a call soon. After that, we went over the record from the pediatric cardiologist.
She began by saying she was sorry and she honestly couldn’t believe our baby had DORV. It was a very rare heart defect and she honestly didn’t believe that our baby actually had that. She went over the report line by line stating stuff she believed was false or hard to believe. She gave us hope.
She then led us into her ultrasound room to take a look for herself. She noted the more popular “rare” heart defect was called Hypoplastic Left Heart Syndrome (HLHS) and could be seen on an ultrasound very very early in development. She insisted she didn’t see that. She did note that the left ventricle looked a little small, but she wasn’t too concerned with it. She could see the four chambers that the cardiologist insisted couldn’t be seen. She wasn’t convinced that the cardiologist was correct and reaffirmed how glad she was to refer us to Houston.
A few days later I received the call from Texas Children’s to schedule my appointment. They would be scheduling me with maternal fetal medicine, followed by an appointment with my new OB, and then the pediatric cardiologist. It was going to be a long day, but we would have our answers. Thankfully they were going to be able to see me in just two weeks time, the Friday before Thanksgiving (November 22), which was perfect as I was scheduled for vacation the entire following week.
My husband and I did our best to not worry. There was nothing we could do anyway. But after seeing my local OB and hearing that she didn’t believe it to be what the pediatric cardiologist said it was, gave us so much hope. We were starting to feel better already. If anyone were to know anything, it would be Texas Children’s…they had the top-of-the-line equipment and the top doctors in the nation.