A Contribution by Reagan Wilda. For more information see Reagan’s section on this website or her Facebook Page.
If you have been following our story, I am guessing I have made my point by now that there have been many medical terms and expressions that I have become familiar with of the course of the last seventeen months , since discovering I was pregnant with twins. We were introduced to terms like Twin to Twin Transfusion, anemia, brittle bones disease, double hernia, NICU and as you know by now congenital heart defect (CHD). These things, all in their own right, held certain challenges and required both my husband and I to not only stay informed so that we could advocate for our children, but also to help us give them the best care possible once our twin girls came home. I was recently reminded during a phone conversation with my daughter’s cardiologist that having a child born with a congenital heart defect, while very scary is not a diagnosis which will ultimately cause our child to live life on the sidelines. As any parent, I want my children to have opportunities that will help them become strong and independent adults. I never want to be faced with telling either one of my girls that they can’t do something because they have limitations, and I feel very fortunate that I won’t have to.
As many of you may or may not know, congenital heart disease can be a very broad diagnosis. It means that a child is born with an abnormality to their heart, and the severity of the condition can range from mild to severe. After our daughter survived delivery, the doctors were able to give her an accurate diagnosis. It was touch and go in the beginning, but once she was born and began to grow, her prognosis was looking clearer. There are many different kinds of heart defects, our little girl was diagnosed with what the doctors considered moderate to severe pulmonary stenosis. If you’re anything like me, you have no idea what this is and you may assume the worst. The doctors did their best to explain this condition and after diagrams and what seemed like hours of questions answered, we felt like we had a better understanding of her condition. Without going into too much detail, for those weak in the knees, it is when the pulmonary valve does not function properly causing increased strain to the heart.
As always, I am compelled to remind everyone I am not in the medical field, as with everything I write about, this is in my own terms and how I experienced and understand it. So please do the research if you want to know more, there are great resources out there. What I can tell you is that my daughter’s condition did require surgery which in the end would change her diagnosis from severe to mild pulmonary stenonsis. What did this mean? It meant that instead of trips to the cardiologist every three weeks, we now go every three months. It means that as she grows, her heart may grow stronger. But it also means that there is a chance the condition could become severe again in which case another surgery may be needed. Only time will tell. Regardless, doctors are keeping a close eye on her and her prognosis is no longer scary, it is definitely manageable.
This leads me to why I have decided to write about this. It often comes up in conversation that one of my twins was born with a congenital heart defect. What I have found over the months is that the term, to most people is very alarming. It was at one time very alarming to me too. Don’t get me wrong, heart defects are certainly nothing to dismiss and there are severe cases and different kinds of heart defects which are indeed very worrisome and require lifestyle adjustments. We are lucky that our daughter can live a normal and active life. However, not everyone understands that. Many people, including myself at times treat my daughter as though she is too fragile to do certain things. “Can’t let her cry, she has a heart problem”, or “she should probably take a break from playing so she doesn’t get tired”. My hope is that as my daughter grows up, eventually starts school and wants to be involved in other activities, that she is not held back by lack of understanding her condition. I will do my best to make sure that she is always given the same opportunities as other children. She is strong, she is healthy and she can and will be able to do anything! I will do my best to inform and educate people in her life but most importantly, I will teach her that she is no different from other child and that her heart condition does not define who she is, and it never will.
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