Charlotte's Story: Parent's Letter Project Cardiac surgery- Charlotte’s mom

I'm writing this letter to you from the Cardiac Intensive Care Unit (Cardiac ICU). This will be your home for a few days after an amazing surgeon fixes your baby's heart.

We found out about Charlotte's condition the day after she was born. A continued heart murmur caused the pediatrician in the hospital to be alarmed. After an echocardiogram, Charlotte was diagnosed with tetralogy of fallot. We were reassured, however, that her version of the condition was favorable. But, just like you, that didn't really make us feel better. A problem with her heart? Open heart surgery on a newborn? That is some scary stuff! And unfortunately, it gets worse before it gets better, but it gets better, I promise.

After Charlotte's surgery was scheduled, we came to Children's National for a pre-op visit. She had been followed by a cardiologist at the Children's Regional Outpatient Center in Frederick weekly since she was born. Her condition had remained stable, so we were all ready for the repair. During the pre-op visit, Charlotte had some tests (blood work, X-rays, an EKG, and an echocardiogram) and then we met medical specialists, including her surgeon, the world-renowned Richard Jonas, MD. With my tissues in hand, we began to discuss what the repair would entail and the associated risks. Good news, I didn't need the tissues! Our baby was having open-heart surgery, so obviously we were prepared for some risks. What was reassuring was that Dr. Jonas discussed each part of the repair and the specific risks involved and the likelihood of them occurring. It was much more comforting to hear those specifics than what I was expecting, which was an overall statement like "your baby has a ___% chance of making it." Ironically, the person who has the most accurate and specific information about your baby, their condition, and repair is the last person you speak to! You spend weeks hearing "it depends" or "the surgeon will have to answer that" when you ask the doctors and nurses questions. And guess what? The surgeon will answer the questions you have and hopefully, like us, you will feel a little more at ease.

To my surprise and delight, Charlotte's surgery was over before we knew it. The very worst part of the day was waiting to hand her over to the cardiac anesthesiologists. We had mixed emotions. I struggled with not wanting to give her over while at the same time wishing they would take her sooner so it would all be over. Finally it was time. After forcing down some coffee and wandering around for a few minutes (ok, a few hours), we got the page (you get a pager with text updates from the operating room during the procedure) to come back to the waiting room. After about an hour, Dr. Jonas came out and went over how it went. We were so blessed that everything went as planned. They anticipated an uncomplicated recovery without any setbacks.

That brings me back to where I am now, Charlotte's bedside in the Cardiac ICU. It is a little scary to see your baby with tubes, lines, gauze, and all of the other medical gear occupying their body, but once the nurses explain what it all does and how it helps your baby, you will feel much better. The good thing about all of the stuff is that it will be removed…one or two things at a time. During the first day or so following surgery, the puffiness from IV fluids will go away, and you will begin to see again the beautiful baby you know and love.

The whole process is not an enjoyable one. I wish congenital heart defects didn't have to exist. But because they do, and we, like you, were forced to live and cope with them, we wanted you to know that it gets better, it truly does. Think of this letter when you're at the bedside of your newly-repaired perfect baby!

Sincerely,

Charlotte's Mom

Treatment Team

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