Dezi's Heart Story
| Told by his mother Debbie.
Diagnosis: Transposition of the Great Arteries
All of a sudden, the testing became a priority. If the baby had other genetic problems, it would be to our benefit (and the baby’s) to know these things before the birth. The doctors talked about all the things that could go wrong. He even mentioned terminating the pregnancy! I was in tears and shock. There was no way we were going to terminate the pregnancy, but we quickly reached the same conclusion regarding the testing and agreed to test immediately. So there I was–feeling the baby move that morning to being tested for genetic disorders and evaluating whether or not we should continue on with the pregnancy. As much as we wanted to be surprised about the sex of the baby, we also wanted to begin prayer immediately in the baby’s name. Luckily, the tests came back negative. And while we learned we were going to have a baby boy, we also braced ourselves for whatever was to come. I felt scared, I looked for reasons as to how this could have happened, and I wanted to keep this to ourselves. My husband took a different approach. He thought everyone should know. His thinking was the more prayer we can get, the better we would be. So he talked about our baby’s congenital heart defect every chance he got. I decided that I needed to stay positive and hopeful for the baby’s sake and that’s exactly what I did. I learned not to let things get me down and I fought to make sure the baby felt happiness instead of depression. We kept on planning for our baby’s arrival just as if we didn’t know we had an operation on it’s way. Okay, so fast forward! Lucky for me, I had a healthy pregnancy overall. I decided to have the baby naturally, but pla nned for assistance with drugs if needed. We prepared and were ready when the baby finally came. The pediatrician, the surgeon, and the heart doctor formed their team and planned way in advance of the birth. In this particular case, it was a god-send that we knew about this before the birth. Well, the whole team was ready, but Dezi wasn’t! He came 9 days late! Today we joke and say he just wasn’t ready to come out and face the operation. I went into the hospital around 10:30 pm and finally gave birth around 10 am the following morning. Turns out—I needed that epidural. They had a little problem getting him to breathe on his own, but brought him around. And I was scared right from the get go. They let me hold him for about a minute before they took him for testing and to place him on oxygen. With the transposed arteries, the only oxygen our baby was getting was through the tiny hole in his heart. So our plan was to keep the hole in his heart open with medicatio n and ease into the operation. Well, that didn’t work. We almost lost him in the first 24 hours. The doctors decided they needed to go in through his veins and burst the walls of his heart open to allow for more oxygen. That was a major operation in itself, but it was the only thing that was going to save him. So we had our first setback. Thank God we had the most awesome nurse ever! She worked past her shift until she was satisfied Dezi was going to make it and he did! He made it an entire week on his own! I held him as often as I was allowed to hold him and relished in observing his every breath. I was fortunate enough to see him and hold him before he went in for his major open-heart surgery. But we knew the open-heart surgery was coming. 7 days after his birth, his breathing oxygen sunk to a very low level and we knew we were ready for the operation. Dezi went in for his operation. I hated letting him go. You just get the feeling that this might be the last time you’re going to hold him and there is NO feeling that can compare to knowing you can’t do anything to help your baby. It is the most difficult thing I have ever encountered in my life! Off he went and all we could do is wait. The surgeon and his team were really wonderful. They updated us every 1/2 hour or hour throughout the operation. When they were done, we were told our baby did great. But we weren’t out of the woods. He needed to recover and every baby does so in their own manner and in their own time. Once again, I can’t begin to describe how I felt the first time I saw my baby with tubes and wires and bandages. But, he was ALIVE and breathing! Dezi continued to recover and was doing so remarkably well. They begin removing him from medications, one at a time. And a week later, we were checking out of the hospital!
|
Being a first-time mom, I LOVED being pregnant! Other than some really tough bouts of drowsiness, my first trimester went by like a breeze. I was scheduled to have my first sonogram and I was super excited. I hadn’t felt the baby move but wasn’t too concerned since I was a newbie. As a 35-yr old new mom, my husband and I decided not to seek out the sex of the baby, nor did we want to have any tests done. We gave this a great deal of thought and decided we would cope with whatever cards we were dealt. We were going to love this baby, no matter what. So no tests! The morning of my appointment came and my whole life was a whirlwind. I finally felt the baby move that morning and I was riding on the clouds! I went in and the nurse did her thing. As she grabbed a video and went in search for the doctor, my happiness soon turned to concern. Sure enough, the doctor was pretty certain he had detected a congenital heart defect. He explained that he “thought” the aorta and pulmonary artery were transposed. However, he went on to explain that it was difficult to diagnose since it was so early in my pregnancy. Furthermore, they wouldn’t be able to make 100% diagnosis until the baby was born. Our world turned upside down.
Dezi was born December 3 and on December 18th we were home! Incredible! That was 7 years ago and today, Dezi is a thriving young boy. Yes, he has his heart checked every 2 years, but he’s just like all the other kids in his school. He plays baseball, he talks back, he’s all boy! And I love my little miracle boy! The best advice I can give is to stay positive and take baby steps as you go through this. Don’t spend too much time fretting over what “may” be, because in the end you really don’t know and you can’t control the outcome. Love your baby and be thankful for the time you do have! God bless!