I don’t know you, yet I consider you my friend. You have just gained membership to one of the clubs that no one really wants to belong to. I am a member, too. Our babies were born with congenital heart defects (CHD).
I know you are scared, friend. I know all too well. My first baby was diagnosed prenatally at 21 weeks with a CHD. We were devastated and afraid – our dreams of a “perfect” healthy baby crushed by the news. Following the announcement of “Congratulations, it’s a girl!” was the almost immediate declaration that something was seriously wrong with the structure of her heart. Of course, details would not be available until much later, but the bomb had been dropped. Our focus was immediately changed from being consumed with selecting nursery colors to being consumed with finding pediatric cardiologists and touring children’s cardiac units and NICUs. With our second child, our son, it wasn’t until he was two months old that we learned of his CHD diagnosis.
I understand what you are going through right now. I get it. I know you are probably feeling so isolated, but I am here to tell you something very important. YOU ARE NOT ALONE. Not even close. You may not know this yet, but CHDs are the most common birth defect. Approximately 1 in 100 babies are born with some form of congenital heart defect. I had no idea how common this was until our family was affected.
You will soon come to learn that you have an instant connection to other “Heart” moms and dads. No one understands what you are feeling like other Heart parents. Sometimes it is difficult or impossible to verbally explain what you are feeling – your fears, your questions, your worries. In these cases, please remember that all the other members of our club know exactly what is in your heart.
Our family’s motto for our babies has always been “Believe”. Believe in miracles. Believe in doctors. Believe in yourself and the strength you never knew you had. Just believe. The advancements in medicine today are amazing, and they continue to evolve everyday. It is awe-inspiring what surgeons can do with a heart the size of a baby’s fist. Things were uncertain for my daughter for a while after she was born, and she has been through a lot including two open heart surgeries to date. She is six years old now, and my son recently turned one. Both are doing very well. Believe.
Please don’t ever hesitate to reach out to someone for support when you need it. There are many great organizations and online support groups out there for parents like us.
I get it, friend. I am right there with you. So many of us are.
A Fellow Heart Mom