When It Was Time to Get Help for My Mental Health as I Parent a Child With CHD

I see the same type of question posted a lot among the CHD Facebook groups I’m in: “I’m barely getting by right now. I worry constantly about my heart warrior; the stress is almost unbearable. Do you guys ever feel that way?” Someone in Arizona wants to know if any of us have talked to a therapist. Someone in New York wants to know if any moms quit their jobs after finding out their child has a significant heart defect. Someone in Nevada wants to know if anyone has tried anti-anxiety medication to help combat the incessant worry and fears that take over once you’ve climbed aboard the CHD roller coaster. The most heartbreaking posts are those from parents who feel like they don’t have anywhere to turn. As one mom put it, “I just feel…lost.”

These posts make me feel many things, mainly empathy and sorrow. I want to reach out and squeeze each mom and say, “Guess what? This is probably the worst you are ever going to feel — this, right now. It might last awhile, like it did for me. But one day you’ll be able to see beyond your sweet child’s diagnosis and reach out for help for you. You’ll be able to see that one of the best things you can do for your child is to take care of yourself.” Easier said than done, though.

In 2015, after getting the awful news that my yet-to-be-born baby had a critical CHD, I walked around my office at work like a zombie. I answered emails, went to meetings, made jokes, performed all my tasks, managed a team, gave performance appraisals. But I was a robot. I prided myself on the ability to stay strong and keep quiet as I endured the last four months of my pregnancy without telling many people my news.

I kept up the façade for 18 months, through my daughter’s three open-heart surgeries (two of which were unexpected emergency OHS, one with a super harrowing ambulance ride). I wasn’t always a zombie, but I definitely felt like I had to compartmentalize certain aspects of my life in order to function. I thought I was being strong and brave and able; I didn’t need a support group or anything different from what I had prior my daughter’s diagnosis.

Meanwhile, I was crying every day. When my mother-in-law would text that my daughter was acting a little off, or had a slight fever, or had spit up/vomited, I would spiral into a vortex of anxiety and fear. Fear, for me, has a temperature: I feel a coldness grip my heart and wash over my chest; I can’t move or talk. At work, I would go to a secluded hall to take deep breaths, text my MIL and husband, or start calling the cardiologist and pediatrician as soon as I heard that my daughter might be ill.

There came a point where my daughter had to get an MRI to rule out any neurological issues, and at the time, she had pretty severe torticollis. We were at the neurologist’s office, and I asked what the neck tilt could be if it wasn’t torticollis, and the doctor brusquely said, “Well, with your daughter, it could always be a stroke.” A stroke? She’s more susceptible to strokes? I called my mom and broke down.

While I knew my daughter was incredibly fortunate to survive and do so well as a not-yet-2-year-old with three open-heart surgeries in her short lifetime, I was so sick and tired of all the potentials of very scary conditions. With her complex heart, anything is possible — endocarditis, strokes, excess fluid on the brain, developmental delays, and on and on.

I felt like I was drowning. I didn’t want to admit I was not handling things well and was not able to be strong for my daughter. I had an upcoming well-woman exam, and after a lot of internal back and forth, I decided to tell my doctor that things were… not good.

At the appointment, I was so anxious pulling into the parking lot. This was the office where my daughter’s defect was first detected. I found myself taking deep breaths, shaking, as I blinked back tears. Once my doctor was in the exam room with me, after going through the normal questions, I haltingly told him that things were not going well and that I was afraid I had an anxiety disorder. He sympathetically asked, “Whitney, what do you worry about?” I looked at him and truthfully answered, “What is there to not to worry about?” In my mind, there was nothing in my world that was exempt from my anxiety and fear.

He prescribed an anti-anxiety medication after asking me a bunch of questions. I was in such a bad place I emphatically told him I didn’t have time to see a psychiatrist — I was so overwhelmed I couldn’t see that my mental health should be a priority. I didn’t tell my husband because I was ashamed that I wasn’t able to be strong anymore. Once on the prescribed med, I went through the first few weeks of common symptoms: the upset stomach, the low points where I questioned if this was a huge mistake and the breakthrough anxiety that pierced my days.

But one day, maybe three weeks in, I noticed I felt a bit more calm, a bit more like the old me. When my daughter and I both got the flu, I wasn’t so anxious that I couldn’t function… I felt more annoyance than anything! I felt the normal worry that my sons and husband would get, and I was annoyed that I had to miss a week of work. I hated that we both got it, but I wasn’t drowning in fear for my daughter’s life.

Now, after three Rx tweaks and 14 months on a medication, I feel a happiness I don’t think I’ve ever felt. My moods and emotions aren’t dimmed or muted, they just feel normal. My days aren’t darkened by ominous clouds of anxiety and fear. I still have moments of worry about my sweet daughter, but I’m able to acknowledge and label the scarier moments for what they are: breakthrough anxiety about things I can’t control and have to hand over to God. I feel peace and contentment. I feel gratitude for how my daughter has overcome so much, despite my near-breakdown. I feel no shame for reaching out to my doctor to get help. My husband has seen all the positive changes in me since I’ve been on the Rx. My children benefit from a mom who is more present, more engaging and happier as a person.

So what I want to say to all the heart parents out there who feel lost, who wonder if they’ll ever live a life without constant fear, is this: you will find your way. You’ll reach a point where things get so bad that you’ll realize a change has to be made– that whatever you decide to do is better than your current situation at this moment. That you still matter, even though your every waking (and sleeping) thought is about your child. That whatever you decide to do, whether it’s a medication, therapy, support groups, writing,
exercise or whatever else you find, it’s because you reached a breaking point and made the hard choice.

My favorite quote, ever, still speaks volumes to me and I pray it does to you, too:

“I found that every single successful person I’ve ever spoken to had a turning point, and the turning point was where they made a clear, specific, unequivocal decision that they were not going to live like this anymore. Some people make that decision at 15, and some people make it at 50, and most never make it at all.”  — Author Unknown

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Editor’s note: Please see a doctor before starting or stopping a medication.