FINDING OUT ABOUT WILLIAM'S HEART

July 2012:

During my 22 week ultrasound my doctor said he couldn't get a good look of the heart, he said he wasn't worried just couldn't get a good look because of his position. We were referred to Fraternal Fetal Medicine to get a better look.

Aug 6, 2012: *The update at this doctors appointment was not William's correct diagnoses. 

I met with Dr. Feltovich at the AF Fraternal Fetal Medicine. I went by my self because my doctor gave me no reason to believe there was a problem. I brought London with me thinking it wouldn't be a long appointment. Dr. Feltovich couldn’t get a great view either because of the baby’s position. London was getting very impatient so the doctor had the nurse take her out for a little bit. She told me something didn’t look right with our baby's heart and to come back in another 2 hours to see if we could get him to move, she suggested that I bring my husband.  I called Tyler at work crying and told him something was wrong with our baby. He got work off, we dropped London off at my parents and went back to the doctors. She was able to get a better look this time and told us our baby had a heart defect called AV canal. We were told that some babies could live somewhat of a normal life but usually this defect was related with down syndrome and some other issues so some only live a couple years. We were devastated, but we knew we would love and cherish any time we would get with our son. Fraternal Fetal Medicine referred us to Primary Children’s Medical Center. It was a terrible 2 week wait between appointments because we had no idea what the future held for our little boy.

End of August 2012:

We went to Primary Children's were they did an hour long echo ultrasound. The echo took an hour and they took over 100 different pictures of our baby's heart. Afterward the tech took us into a different room to meet with Dr. McCandless with cardiology. She asked us what we had heard and then she said she had better news. Our baby was diagnosed with L type Transposition of the Great Arteries (TGA).  L type meaning that it is "Congenitally Corrected". We were told of all the heart defects, this is the one to have. It is very rare, especially to have the corrected version. She also said she noticed that the Right Ventricle was pretty small but they would keep an eye on it to see if it would grow. The other good news was that because his defect was "corrected" surgery most likely wouldn't be needed and this heart defect was not related with down syndrome. Meaning he could be born and do just fine with nothing being done.

I will try my best to explain this as simple as possible. CCTGA or L type TGA means that the ventricles are switched as well as the main arteries. The anatomy of the heart is not correct but the plumbing or blood flow is (blue blood is pumped from the heart to the lungs, red blood is then brought back to the heart  from the lungs and pumped out to the body) - hence why it is called "Corrected". Make sense? 

The problem with this defect is that the ventricles that are switched are built very differently. The RV is meant to pump to the lungs (low pressure, easy job) and the LV is meant to pump to the body (high pressure, hard job). The doctors wanted to keep an eye on the RV because it was small and they wondered if it could handle pumping to higher pressure as well as volume of blood. 

Here is a picture of a normal heart vs CCTGA:

Also here is a video of a NORMAL HEART:

Sept - Nov 2012:
I continued to meet with my OB, Maternal Fetal Medicine, and Primary’s.

My next appt with Maternal Fetal Medicine I was pretty upset afterward. I met with a certain Dr. who spoke very fast, didn’t know anything about the heart defect and was very insensitive. He started telling me information about the heart defect that didn’t correlate with what Primary’s had told us. Then after we walk out to the waiting room he said, "Oh wait, also your baby will most likely be down syndrome." He wasn’t sensitive about it and told me in front of other patients. I was bothered because I we had just been told by Primary's that it wasn't related. I was so confused and didn't know what to believe. I had to wait another couple weeks before my next appt at Primary's. So I spent more weeks worrying about the unknown. Looking back, I'm not as upset with them not knowing about the defect just bothered I had to worry for so long about something that wasn't true. In their defense, this heart defect was very very rare and I'm sure they don't see it very much. I just wasn't very impressed with the way they handled sharing personal and sensitive information in front of others.

My second visit with Primary’s they did another echo. I met with Dr. Pinto. She said things everything looked good and not much had changed. She cleared up that it was not related with down syndrome as suggested I meet with the Fraternal Fetal Medicine at the UofU. They also recommended that I deliver up at the U just in case anything went wrong because it is next door to Primary’s.

My third and last visit with Primary's being pregnant everything looked good and we were all set to deliver at the U.