By Marissa Khosh 
What if something is wrong that we can’t see from the outside? I wish her next cardiologist appointment was not scheduled so far out. I wonder if she will have problems with her heart down the road as a result of everything it’s been through. I’m going to have to remind her when she’s an adult how important it is to see her cardiologist regularly.
These are the thoughts that run through my head frequently regarding my 18-month-old daughter. She was born with a heart defect. She looked perfect on the outside. We didn’t even know until a nurse requested imaging to evaluate a heart murmur when she was two days old.
It was a shock to hear that our perfect little newborn baby would require open heart surgery sometime between 3 and 6 months old. It was also unexpected that we would end up with four hospital admissions, a feeding tube, and an extra surgery before we would get to that open heart surgery to patch her largest VSD.
With everything she went through and all the unexpected twists and turns along her heart journey, I learned something: Receiving a diagnosis for your child changes how you view that child forever. Even when that diagnosis is fixable, you will always wonder “what if?”.
My daughter’s heart defect diagnosis was completely unexpected. I am no longer under the assumption that if she looks fine on the outside, she is fine on the inside. Even though the logical side of me knows her heart is almost completely “normal” now, experience has taught the emotional part of my brain to always be watching for signs of trouble.
Once your child receives a diagnosis, you never forget the implications or possible implications that come with it. Even if you end up with a best case scenario—as medical personnel so cheerfully announce—the best case scenario for any medical condition is not exactly what new parents dream for their child.
To be clear, I am extremely grateful that my daughter’s condition was able to be medically healed. I am fully aware this is not the case for every child. I often wonder why some children who receive a diagnosis live and thrive while others suffer or don’t survive. It breaks my heart and humbles me at the same time.
But for the parents of a child with a diagnosis, there is always doubt about the stability of that child’s medical condition even after he or she has healed. Because, after all, how often does someone receive a diagnosis on their child and say with a shrug, “Yeah, I’m not really surprised.” The diagnosis is surprising from the start, so who is to say there won’t be more surprises?
A child’s diagnosis changes how you watch them. I don’t think I’ll ever look at my second-born daughter quite the same as I do my first. It’s not a difference in how much I care for each one or my desire to make sure each daughter is healthy. But there will always be a certain level of–what shall I call it . . . fear . . . anxiety . . . worry—whenever I look at my second daughter’s health status.
It’s a feeling that does not exist with my older daughter because she has never been in a medically dangerous situation. Sure, I have other concerns about my first daughter in other areas of her health and well-being, but I’ll probably never wonder with apprehension whether her heart is functioning well enough to support her level of exertion.
A child’s diagnosis forever imprints certain things into your mind. My daughter was technically in chronic respiratory distress when she was in heart failure. Although she handled it well and it was considered normal for her condition, it was something I was constantly keeping an eye on. We never knew when we would end up back in the ER for concerns over labored breathing, weight loss, or dehydration from vomiting.
Now her breathing is completely normal. Her heart is mostly normal. I know that it is extremely unlikely that she will go back into respiratory distress or have any other heart failure symptoms at this point. And yet, every now and then, I can’t help but pull up her shirt to watch her breathing for a minute . . . just to be sure.
A child’s diagnosis changes a parent. That diagnosis doesn’t disappear even when your child is considered healed from a medical condition. The parent of a medical child will always be the parent of a medical child. But the beautiful thing about that is that being a medical parent gives you an understanding for other medical parents that you were not capable of having before that diagnosis.
by Sarah Lango 
by Megan Neisius 
by Cassandra Kostuch 
