Joaquin was twelve hours old when a nurse heard a murmur in his heart. Minutes later, a technician rolled an echocardiogram machine into the nursery, and attached more machines to monitor the steady whoosh of blood through his pink body. We were ordered up to a NICU station filled with more beeping machines, bright lamps, and most of all, our worries and questions. Finally, a cardiologist arrived to describe Joaquin’s three congenital heart defects.
This week is Congenital Heart Defect Awareness Week. This week also marks one year since Joaquin’s heart surgery at 8 days old. My memory of the panic, pain and confusion we experienced at that time is much like my memory of childbirth, existing in a protective haze. A year later, I still bring out those memories in manageable slices. Today I remember the questions. Here are some of the big ones.
What is a congenital heart defect?
A congenital heart defect is a heart defect present at birth. It is the most common kind of birth defect and the most frequent cause of death due to a birth defect. This is partly because the term covers such a large range of heart problems. Some heart defects are caught during prenatal care. Others, like Joaquin’s, are more difficult to detect. In fact, we had an ultrasound the morning of what ended up being Joaquin’s birthday, and were told everything was normal.
Is it genetic?
Congenital heart defects may be related to genetics, but not necessarily. This was a particularly important point for us to make to our families. Once everyone knew about Joaquin’s heart, it was kickoff for the game of “Who gave the baby the heart problems?” Even though our cardiologist informed us that Joaquin’s particular issues were not necessarily inherited, our families soon began tattling on each other’s hearts. There were lots of defensive claims of healthy hearts tracing through generations. The thing about this kind of back-and-forth is the feeling that someone must be at fault, which brings us to…
What causes a congenital heart defect?
With such a wide range of heart conditions included in the term, causes are likewise varied. Sure, some are passed down through genetics. Some might be caused by a difficult pregnancy or trauma early in pregnancy. Many have no known cause. In our experience, it was futile to play “hypothetical causes” with our son’s condition, and a little painful when others did. I had pneumonia and intense morning sickness during Joaquin’s gestation, and worried that the combination somehow starved his developing heart into deformity. As everyone tried to guess where Joaquin’s heart went wrong, I secretly dreaded learning that it was my fault.
What can be done for babies born with heart defects?
Again, the wide range. Some kids will need restricted activity, medication and frequent checkups. Some will get a one-time surgery and be competing in Iron Man competitions in thirty years. Joaquin grew out of one heart issue, had surgery for another, and may need surgery and a repair of the initial surgery as his heart grows. The cardiologist will always be on speed dial.
In the end, I wouldn’t advise family and friends of parents going through our experience to hold back their questions. Even when they hurt, we knew these questions came from a place of love and worry. They were asked by people who wanted to understand exactly what was going on and show their mutual concern. What I would suggest to loved ones is: research. Nothing shows caring more than being able to say, “So I read about coarctation of the aorta last night, let me see if I have this right…”
As for us? A year after having his ribs spread, aorta snipped and then sewn back together, Joaquin is your usual toddler. The most important room in his life these days is the one he shares with his brother. I’ve stopped panicking when he sleeps for a long stretch at night. It took the support, love, expertise and unexpertise of many people to get us to this point, and of that I am very aware.