My Son Was Diagnosed With A Heart Defect
When I was pregnant with my son in 2021, we found out that he had a congenital heart defect. He was diagnosed with right aortic arch/vascular ring which occurs when normal vessels are in the wrong place. This may cause pressure on the trachea or airway which was described to us as basically internal choking.
As two very anxious individuals, my husband and I, tried to do as much research as we could to determine how his life would be impacted and this was all before we met with specialists.
I think having knowledge on every diagnosis so readily available at our fingertips through the internet can be helpful in helping prepare, but it is also a hindrance in the case of causing a lot of questions and “what if/worse case” scenarios. After meeting with the cardiologist, we gained additional insight and learned that our son would be monitored for a period. There was not an immediate need for treatment, and he may not even need correction for this diagnosis at all. Some individuals with this diagnosis are asymptomatic and don’t need treatment, while for others, surgery is necessary. It was basically a waiting game as he got older and whether the ring would cause pressure on his trachea.
Our wait has now come to an end, and at two years old, we found out our son would need to have corrective surgery to relieve pressure that is being placed on his trachea.
I did not handle this well. When I learned that a percentage of individuals would not undergo surgery, I just assumed that would be my son and I placed it out of my mind. Our cardiologist ordered a CT scan of his chest to determine if surgery was warranted and I avoided it as long as I could. We finally had the CT in September, and I learned a lot about my coping style at this time, or lack thereof. I buried myself in work. I placed an enormous burden on my husband to pick up the emotions that I could not. He made all of the medical arrangements and I refused to listen to any details of the surgery. He kept trying to communicate with me about a plan and I kept being dismissive. What is ironic about all of this is that I am a licensed therapist and I talk with individuals daily about how to overcome their anxieties. I also had been coaching our son since his CT that he “can do hard things”. Yet, I was unable to implement these things for myself. I quickly made an appointment with my own therapist to address my denial.
My attitude slowly started to shift.
I discussed my fears with my colleagues who had all undergone medical procedures. While not common, I realized that I knew a lot of people around me who had undergone some type of heart procedure. The more I was able to relate to my friends’ stories, the more I began to slowly accept my reality. My husband sent me a breakdown of the surgery via text and I started to ask him questions. I finally contacted the medical professionals at the hospital to arrange additional appointments.
And I implemented one very small, but very big mantra- all we have is now.
And I’ve focused moment by moment ever since. At the core of anxiety is control. We worry about things that we cannot control the outcomes to. It is giving up control where living with graciousness truly begin. As far as our son, we should know more about his scheduled surgery at the end of November.
Some helpful tips for anxiety I’ve learned during the process:
- Have self-awareness about what your worries truly are
- Do research, but when/if it gets overwhelming stop and take a break
- Talk to people and connect with others who have had similar experiences
- Focus on the present moment
- Find daily mantras to remind yourself, think- Things will work out. We can do hard things.
- Remember that not everything is within your control