Why I Worry About My Son Who Has a Congenital Heart Defect and Autism

Comorbidity — an interesting term, and one that, to me, is both depressing and ironic.

In June 2011, two months before his birth, my husband and I learned there are odds on our son’s mortality, as he has a critical congenital heart defect (CHD), hypoplastic left heart syndrome (HLHS). Without a series of surgeries, HLHS is “universally fatal.” However, these surgeries have made him one of the two-thirds who survive to school age.

We are extremely fortunate to say that he is now a 7-year-old in the first grade. However, two years ago, we learned that he has autism spectrum disorder (ASD). It was quite a blow to receive another diagnosis that affects his daily life, but unlike his heart, this diagnosis wasn’t a surprise.

His cardiologist, teacher, special educator, aide, speech therapist, nurse, principal and tutor all work together well with my husband and me, which is something I am also very thankful to report. He is a comical, caring, creative boy. He has days where he is a model student, and he also has difficult days.

His not so good days may involve yelling and physically acting out, at school and at home.

Many of these days, he is angry or seemingly anxious. This is not an excuse for his behavior, but we’ve found it is often very hard for him to regulate his emotions.

He doesn’t come home talking about who he played with at recess. We hear about how it is hard to place his desk, even his classroom for the year, due to kids/parents not wanting their kids to sit next to him.

Understanding how hard it is for the school to manage his meltdowns, and how hard it must be for him to feel this way, I often feel desperate and, honestly, quite useless to help.

In hopes of finding a clue to the reasons for his behavior and ways to help him, I have spent hours researching online. Much of it is over my head, but a recurring theme I have found is comorbidity. I am familiar with the term from my CHD research, meaning the occurrence of more than one condition and/or disorders in the same patient. As a “heart parent,” I have to accept, as much as I don’t want to, the odds facing my child’s health. However, it takes on a whole new meaning when both CHD and autism have increased comorbidity with anxiety, depression, and other psychological conditions.

Before reading the next few paragraphs, please keep in mind that I am not a researcher nor a physician by trade. I just pretend to be both after my son goes to sleep. However, I do feel safe in relaying the following statistics.

In a study by David R. DeMasso and colleagues published in the March 2017 issue of “Pediatrics,” of those with single ventricle congenital heart defects, which my son has, 65 percent of adolescents are diagnosed with a lifetime psychological disorder, compared to a referent of 22 percent. Of these, 35 percent have anxiety, most often separation and social anxiety, and 34 percent have ADHD.  Eighty-five percent were found to have substantial functioning difficulties in different environments, such as home, school and with peers.

Studies of children with autism spectrum disorder (ASD) show that 40 percent are diagnosed with at least one anxiety disorder. The most common was specific phobias (30-44 percent), but social phobias (17-30 percent), general anxiety disorder (15-35 percent) obsessive-compulsive disorder (17-37 percent), and separation anxiety disorder (9-38 percent) were also commonly found.  According to Brian A. Zabowski and Eric A. Storch in their January 17, 2016 article in “Future Neurology,” the range for each anxiety disorder is to account for the overlapping of symptoms with ASD.

Similar results were found in a study by Cecilia Belardinelli et. Al., in their March 11, 2016 “Journal of Childhood and Developmental Disorders” article. They found that 41.9 percent of school age children and adolescents with ASD met the criteria for anxiety.  Accounting for the rate of depression correlating with higher levels of self-awareness, 0.9-10 percent of school age children and adolescents studied had depression.

Due to his heart condition, my son tends to takes longer to recover from common illnesses such as a cold, misses school for periodic cardiac checkups. This is typical, according to a study by Hilda Razzaghi and colleagues, as published in the January 2015 issue of “Journal of Pediatrics.” Their study showed that 14.1 percent of children with CHD missed ten or more days of school per year, compared to 5.3 percent of children without CHD. The numbers I’ve seen on the likelihood of those with HLHS surviving to adulthood vary, but are thankfully, are now much higher than in the past. We are encouraged by seeing active, vibrant adults with HLHS on social media who are honest about their successes and challenges. Heartbreakingly, we’ve also seen children and young adults lost to CHD.

So, in short, how do you combat a serious health condition and autism, both of which may make him feel different, and that other kids may make fun of him for having? This is where the irony of the term comorbidity gets me — it can describe the coinciding of two non-life threatening conditions, but for my child, with the potential for anxiety or depression to lead to self-harm, both can be life-threatening. If feels like the elements of a perfect storm. Honestly, it is no wonder to me that once a child is old enough to understand these conditions, combined with what they may face from those who aren’t as accepting of differences, along with medical treatments and potential hospitalizations, that they develop anxiety.

The thought of my son dealing with all of this is a serious concern for my husband and myself. I have concerns about him having anxiety now, but overall, he is a happy kid. We have utilized counselors to help him understand his behavior and make better decisions on how to respond to them. I want him to stay the silly, joke-loving kid he is now. I make deals with God for him to grow up, but as a teenager, I don’t want him to turn to drugs or alcohol as a way to cope or to fit in. Those activities are dangerous for anyone, but is especially dangerous when combined with his heart condition and medications.

Yes, I understand that just because my son has these conditions, it does not mean that the worst will happen. Yes, I will do whatever I can to prevent it. Yes, we give him all the love in the world. Yes, we try our hardest to give him the resources he needs, in terms of his health, educational and well-being. At the same time, yes, I worry about him. I’m his mother — it’s my job, right? I just wish I didn’t have so many reasons to worry.

I simply want his head and his heart to be happy — literally and figuratively. I can only hope that we are doing the right things for him now to help lessen any anxiety or depression he may have, or develop. I can only hope that that we will be able to recognize any signs he shows, even if he tries to hide them from us. I hope his team at school will as well. They see him more waking hours than we do, making that communication so essential.

Just another thought — from now on, I am making the conscious effort to remove any thought of any of this being “morbid.” I choose to think of what my son is facing, and may face in the future, as coinciding life challenges — and we are a family that has never backed away from a challenge.