Transposition of the great arteries
AJ’s complex heart defect
I was 18 weeks pregnant when we went for a routine ultrasound to check to see what gender our baby would be. It was a boy and my husband and I were thrilled to become first time parents. A few days later we got a call to go to a level 2 ultrasound because they saw a possible hole in our baby's heart.
We were quickly whisked to a genetic counselor and she made an appointment to get an echocardiogram with the Advanced Fetal Center at Children's. We soon found out that our baby had a complex Congenital Heart Defect.
We had no idea what a heart defect was until Dr. Wayne Tworetzky explained in detail what would happen. His diagnosis was Transposition of the Great Vessels, Ventricular Septal Defect, and Pulmonary Atresia. This was heartbreaking! We went through the rest of the pregnancy not really knowing what to expect, but I received amazing care from Brigham and Woman’s Hospital and Children’s. They prepared us with tours of the Cardiac Intensive Care Unit and talked us through the steps that would be taken when he was born.
The day finally arrived and AJ came into this world two and a half weeks early, weighing 7lbs 2oz and 19 1/2 inches long. Since we were prepared for him to come out not crying and having trouble breathing, we were quickly relieved when he came out pink and screaming. I actually got to hold him a few seconds before he was taken to the NICU, and then over to Children's. Our journey was beginning.
While we awaited his surgery, we met some of the most amazing surgeons, doctors, and nurses. AJ was 4 days old when he got his repair. The morning of his surgery was nerve racking. We just wanted it to be over and for him to heal so we could take our baby home. When they took him down it was the hardest moment for us, but we knew everyone that was with him was going to take the best care of our little guy. The surgery took four hours and then his surgeon, Dr. Bacha, came to tell us how it went. He told us AJ did great and went over the logistics and what to expect once we saw him.
During the next three weeks, we spent ever waking minute between the CICU and 8 east. It seemed as though time was going by so slowly, but each day he was making progress. We had a few bumps, but minor ones, and before we knew it, we took our baby home to begin our lives together. Over the next few weeks, we had a few more unexpected returns and overnight stays on the 8th floor. He ended up having to get a pacemaker because the closure of his VSD was causing his top chamber to be unable to communicate with the bottom chamber. We knew this may have been a possibility. We were finally able to make our way officially home when AJ was 6 weeks old.
Since we have been home, we’ve lived a relatively normal life. AJ is developmentally on track, which was a topic of conversation before he was born. We have to go to more appointments to see his cardiologist than a typical child, we take a few extra precautions due to his pacemaker, and he will have more heart surgeries throughout his life, but normalcy surpasses it. By looking at AJ you would never know that he had such a traumatic entrance into the world, until you lift up his shirt to see his scars.
Without Boston Children's Hospital, AJ would not be as vibrate and amazing as he is. He is truly is miracle and each day we are reminded how thankful and blessed we are because of this remarkable hospital.
--- Christine Sorrentino