Dear parents of a child born with a congenital heart defect,
Our son Joshua was born in August of 2006. All routine prenatal examinations, tests, and ultrasounds revealed a healthy baby, so we were completely surprised to learn after his birth that he had transposition of the great arteries (TGA). With TGA, the oxygenated blood was not getting to his body because his arteries were not connected properly. As soon as his doctors figured out what was wrong, Joshua was immediately transferred to Children's National Medical Center for treatment. After Joshua's surgery, he quickly recovered and came home to us, where fortunately he has stayed ever since.
We realize that we were very lucky we lived so close to one of the best children's hospitals with the best cardiothoracic surgeons! The entire team at Children's National took such good care of us every step of the way. Joshua's social worker really helped us come to terms with our son's diagnosis. The surgeon, Richard Jonas, MD, explained the surgery in detail so that we knew what was going on. The nurses took such good care of him and we knew he was in great hands when we had to leave him. Even the concierge staff helped us feel like we were getting personalized care, which is something that I have never felt in another hospital before or since.
Even though we were never given an option to choose which hospital Joshua was transferred to for his cardiac care, we are fortunate that the hospital where he was born knew that Children's was the best and sent him there. If you are going through this, do not hesitate to ask questions and let the staff know what you are thinking and feeling. The social workers and child life specialists will spend as much time as you need explaining things to you, as will the doctors, nurses, and therapists. Make a list of questions so that you don't worry about forgetting. Another tip is to make sure you take care of yourself, especially if you've just given birth. Walk around the hospital, eat, and try to get as much rest as you can—before you know it, your little one will be home and you'll be as sleepless as any other parent of a newborn! Know that Children's has great outcomes for its heart surgeries so your child is in the best possible hospital.
Being the parent of a child with a congenital heart defect is not always easy but you are in good company—there are so many of us out there. Your child's social worker can put you in touch with other parents who can tell you how they coped in the initial stages, as well as how things are now. That has made a big difference to me personally because I did not know anyone who had a child with any type of birth defect before this. Now I know that I am not alone in this, and that is very reassuring.
Joshua's mom, J.C.