An Unexpected Turn of Events

Tuesday, January 14th: at my 12w6d sonogram our baby came back with almost double the normal amount of fluid behind his neck. This prompted us to do genetic testing via blood work to rule out the possibility of down syndrome or a few other genetic abnormalities. I will also note, my doctor did tell me that the excess fluid does sometimes occur when there is a heart defect... I'll get more to that in a minute.

After waiting what felt like an excruciatingly long time, the 6 days had gone by and we received word that all the baby's genetic tests came back normal! Praise God. After hearing the word normal I put EVERY other possibility out of my head and went on with my pregnancy as if nothing was ever abnormal. Side note: because of this additional genetic testing, we were able to find out that our baby was a BOY. Another boy, I was over the moon that Ryder was going to have a little brother and couldn't help but fantasize what it would be like having him, Ryder and nephew Grayson all playing together in a year or so. Three boys under the age of TWO... we're in for it!

Tuesday, March 10th: just 3 days after the loss of my Aunt Suzy and on mine and Garrett's 3rd wedding anniversary, I would be told four little words that would change my world as I knew it. Hypoplastic Right Heart Syndrome (HRHS) - I can still hear it like it was yesterday. After what seemed like a textbook 20 week anatomy scan and kissing Garrett goodbye so he could leave for work, I sat patiently waiting to see my Obstetrician. The last think I expected to hear from her was that there seemed to be something wrong with our little guys heart. It's amazing how something so special like seeing your baby looking like an actual baby on a big TV screen could be shattered by just hearing four little words.

The next steps include a consult with a genetic counselor and a fetal echo-cardiogram to really see what is going on. My obstetrician says there seems to be an issue with the baby's right ventricle, but since she is not strong in cardiology we need to be seen by a specialist to confirm a diagnosis and see what is next.

Wednesday, March 18th: my sister Jacklyn and her kids drove up the night before so she was able to stay with Ryder when Garrett and I went to our appointment with the Pediatric Cardiologist. We arrived a few minutes early for our appointment and got all checked in. As we sat in the waiting room together and I filled out all my medical history forms we tried to make small talk, although I'm sure we were both terrified of what was to come. They took us back to a room and they worked on getting as many pictures of the baby's heart as they could for about 45 minutes. As usual, he was not cooperating.

After the echo was complete Dr. Herold took as back into a room where he described the baby's heart to us in detail. He had drawn us two pictures, one of a normal healthy heart and then one of our baby's heart. He broke down all the differences and told us that he had HRHS like my obstetrician had suspected, but he also had a small pulmonary valve and a hole between his left and right ventricles. He let us know that I would need to deliver at the University of Virginia Children's Hospital in Charlottesville, Virginia which is 2 hours from our hometown.

He told us to take a little time to digest all the information that he had given us and then we should schedule and appointment up at UVA to meet with the cardiologists up there that would treat our son. We were told to try to make an appointment for approximately 4 weeks from now so we could see if the baby's right ventricle had grown at all. After being able to see if his heart had adjusted at all over the 4 weeks, we'd have a better understanding of the course of treatment that he would need once he is born. We agreed and left in I think utter disbelief that this was part of his story and knowing that all we could do from this point on was pray. Pray for our baby, pray for our family, pray for a miracle and pray for guidance and understanding in the months/ years to come.

Diagram of a Healthy Heart

Diagram of our Baby’s Heart