What Is Your Family's Story About Congenital Heart Defects?
Please share the story of your son, Paul, being born with congenital heart defects.
Everything leading up to the pregnancy was fine. Nothing came back on any of the screenings and the doctor gave him a clean bill of health. While we were still in the hospital, the nurse noted he was turning pale and they took him back for some tests. At first, they thought that he might have some sort of bacterial infection and then, as precaution, they called in a cardiologist to do an echocardiogram. At that point, they realized he had really complex heart defects. He had a couple of holes in his heart, five defects that needed to be fixed within a short time. The biggest one was called d-transposition of the great vessels -- the heart is pumping the wrong way, the arteries are going the wrong way, and oxygen could not get to his body.
That started our journey. We went to Children's National Medical Center and waited for a fantastic surgeon, Dr. Richard Jonas, and 12 days later our baby had open-heart surgery. Part of the fix was to insert a connector, a donated baby aorta, that connects Paul's right ventricle to his pulmonary artery. It's like this little macaroni noodle that allows the heart to work properly. So that was sewn in during the first surgery, but 10 months later he had to have a bigger version sewn in because he was growing. In about eight months, he's going to have a third open-heart surgery. We're hoping it'll just be four surgeries; we're hoping the next connector will take him into the teenage years and one after that to take him into adulthood.
How do you prepare him for surgery at his age?
Paul knows he has a special heart and that the doctor has to look at his heart, but I'll be honest with you: It's daunting, and nothing like you've ever experienced as a parent, having to explain to your son why this is happening and assuring him that it's going to be okay. The last angioplasty was just six months ago, and I had to hold him as they were putting him under. So he was in my arms as they were putting the anesthesia over his mouth, and that's pretty tough. I'm really not sure how to prepare when it comes. We would welcome suggestions from your readers on how to prepare Paul and how to prepare us.
Congenital heart disease isn't necessarily inherited -- what are some methods of early detection? What are signs of a congenital heart defect? Are there ways to prevent it?
When you start talking about congenital heart defects, it's amazing how common they are. I think one in 150 children has some sort of congenital heart defect and, out of those, half of them need surgery in the first year. Now, a lot of this can be detected by measuring the oxygen level of your blood. If there were a mandated check at hospitals when babies are born, this could be detected early. In Paul's case, if we'd gone home and he'd turned pale, we wouldn't have known what to do and he could've died.
Can congenital heart defects be detected before birth or do you have to wait until after?
Both. There are specific ways. Paul had the four chambers of his heart, but the blood was going the wrong way. You have to look really hard.
What advice do you have for parents who need support in raising children with life-threatening conditions, defects or diseases? What suggestions do you have for promoting awareness of this issue?
Congenital heart defects are under the radar, unfortunately, especially regarding children. There is no awareness about how prevalent it is. Just the other day, the president signed the American Heart Month proclamation, and it does good things concerning heart disease, but it doesn't deal with heart defects. The key thing is to work with your doctor, have confidence in what's happening, and have family and friends rally around you. We got through our experience because of all the people that helped out. You realize how important family and friends can be.
You have said in other interviews that Paul is your miracle baby. Besides the obvious miracle of his survival, what miracles about life and parenting has he taught you?
He's growing faster than most kids in his class and he has a ton of energy. If you looked at the playground, you would never be able to point at him as the kid who has had two open-heart surgeries and four angioplasties, and who has another open-heart surgery scheduled in eight months to a year. For parents of healthy kids, every day is such a blessing. Sometimes when the kid throws the cereal on the wall or is being a real stinker, the experience we went through gives us a whole new perspective on how precious moments are. Taking the small things, the little laughter every day, right now kind of gets us through to the next stop.
This whole thing has also given me perspective about my job, going through policy and politics in Washington, D.C., to see the bigger picture. It does give me perspective on what's more important.