We think there is something wrong with your baby's heart...

I remember asking my doctor at my 14 week appointment if we could move my gender ultrasound up to my 23rd birthday. I would only be 17 weeks and 6 days along in my pregnancy, but she agreed, and Brent and I were ecstatic.

June 2nd arrived. The plan was to go to our appointment and then meet my parents for a birthday lunch. We could hardly wait to get to the appointment and excitedly walked into the ultrasound room. We saw our baby's profile right away! And within about 30 seconds, we knew he was a boy. I had been so convinced up to that point that our baby was going to be a girl, so I was very surprised, but so excited. He danced all over the screen and we watched, completely mesmerized.

The ultrasound tech kept working on the scan. Brent and I were so wrapped up in the fact that we were having a boy. I don't even remember noticing the tech get quiet or act as if anything was wrong. We just happily watched our baby on the big screen moving around without a care. Once she finished, the tech handed us the pictures and sent us back out to the lobby to wait for the doctor for the rest of our appointment. We had no idea anything was wrong.

Brent and I looked at the pictures of our baby boy while waiting to be called back again. When we were in the room, we just kept looking at those pictures while we waited for the doctor. We started throwing out some boy names. We imagined what our baby boy would be like. We were those giddy, first-time parents, thrilled to have seen our baby for the first time and in the moment, we could not have fathomed the news we were about to hear.

The doctor walked in, looked at us, and said "We think there is something wrong with the baby's heart." She then went on to say that they were trying to get us in to see Maternal Fetal Medicine but in the meantime, she wanted us to come back to the ultrasound room with a different tech, so they could get a better look.. After a few minutes, the tech said "Okay, this angle doesn't look quite as bad". I think both Brent and I let out a deep breath when we heard that.

About that same time, our doctor had just heard back from MFM. They said that they would have just referred us over to a pediatric heart specialist and that we should head over to the hospital across the street and they would attend to us there.

We left the doctor's office in a hurry. I think I was walking so fast just so I could get there and have them tell us that everything was fine. I didn't really feel worried. I felt that whatever it was, if anything at all, that our baby would be fine, that he would "outgrow" it and maybe need a little bit of help when he was born, but nothing else. Brent later told me that during this time, he had already turned to the internet and found an article about Hypoplastic Left Heart Syndrome and starting reading the first few lines before closing out thinking that there was no way that our baby had that.

We waited for a while at the hospital. I called my parents to let them know we weren't going to make lunch and they ended up showing up to the hospital with pizza. We were starving and tired so this was such a tender mercy after such a long day.

After about an hour, we were called up and another tech started the scan. She let us know before she started that she was not a chatter during ultrasounds and wouldn't be speaking. So, we sat in silence, alone with our thoughts. She spent about 30 minutes looking, and said the doctor would be in to talk to us and that he might want to take a look himself. We waited another 30-40 minutes or so.I still wasn't feeling too worried. Looking back, I think it was because I had no understanding of congenital heart defects. I had no idea that it was even possible to be born with a heart like Aiden's. I wasn't worried because I didn't comprehend what I do now.

We then met Aiden's cardiologist for the first time, Dr. Womack. He walked in and motioned Brent to come sit next to me on the bed. And then he started talking. He explained to us the basic anatomy of the heart and what a normal heart should look like using a diagram drawn on the back of a piece of paper. And then he showed us our baby's heart. Where there should have been 4 separate chambers, it was clear that there were only 2. He explained to us we could decide between 1. Termination (which we never even considered) 2. Comfort care (letting our baby die after birth) 3. Three surgeries over the course of his first few years of life. He said that the surgeries would not "fix" his heart and that it would be "wise to assume that he would need a heart transplant at some point in his life". Dr. Womack very delicately explained the details of our baby's diagnosis. He wrote down the official name, HYPOPLASTIC LEFT HEART SYNDROME, sent us with the diagram he had drawn with his email and phone number at the bottom and sincerely told us to feel free to contact him with any questions.

Brent and I walked out in silent shock. We tried to explain to my parents what we had just heard; they had been waiting for us out in the lobby. We finally made it to our car. Brent looked at me and said "I think we just need a good cry." And then the tears started rolling. We made it home, crawled into bed, and tried to get some sleep. I woke up with my head spinning, still trying to wrap my head around this new reality. We had officially been introduced into the scary world of congenital heart disease. 

It has been a hard road. And it's not over. This is our life now. CHD is part of our world and it always will be. We are the 1 in 100. Even though the fear has not left, when I look at my family now, I see hope. Aiden is a miracle and fights each and everyday. He is not his diagnosis. He is so much more and if I could go back and tell myself anything on the day we got his diagnosis, I would tell myself that that even amidst the fear and uncertainty, to prepare to feel more love and joy then I have ever felt before.