“Look at your baby!” the Labor and Delivery nurse exclaimed. My first child, a little girl, was here. I opened my eyes, which had been squeezed tightly shut during the final exhausted pushes of labor. I looked, and there was my baby being held near the foot of my bed. Her skin was a purplish hue and she was not crying.
That moment was instantaneous, and my daughter was whisked away into the corner of the room where the Level III NICU team had been set up and waiting for her birth. Everyone was prepared for her arrival. We had found out at my Anatomy Scan at 21 weeks that my baby was a girl, and almost immediately after that we were informed that she had a serious congenital heart defect (CHD).
Even though we had the tentative diagnosis, no one could be quite sure how serious things were until my daughter was born. We had to be prepared for anything. We chose to deliver at a hospital almost an hour away so we could be in the care of the highest level NICU team available. We had toured a pediatric cardiac unit in an out-of-state children’s hospital so we could be familiar with it when the time came. We did our research and said our prayers, but we could not be prepared emotionally for this.
As I watched the medical team work on my newborn, my thoughts raced:
“What is happening?”
“Is she ok?”
“Why isn’t she crying?”
The words that left my lips could not keep up with the questions running through my mind. The next thing I knew our baby was being rushed out of the delivery room to the neonatal intensive care unit that was on the floor below. The doctors and nurses surrounded her moving bassinet as they hand pumped a bag into her breathing tube. They paused only briefly with her by my bedside, just long enough to allow me only a quick glance, before hurrying on their way.
Later that day, my daughter was transported to the cardiac intensive care unit of the children’s hospital we had visited. She would be hospitalized for 66 days, during which time she had her first open heart surgery. This was a crash course in parenting for my husband and me, and not one that we could ever be ready for. There were ups and downs during those 9 weeks. We had days where we were filled with hope and days that wore us down with worry.
At eight months old, our daughter would have her second open heart surgery with the guarantee of more to come. By age two, she would have a stent placement to bide more time before the next surgery. Our road was always going to be long, and we knew this.
Today six years have passed since my daughter was born. She is now a strong little girl who just entered Kindergarten this year. Over these years I have learned so much about what it means to be a mother and a parent of a child with special needs. I have learned that you can be stronger than you know possible when you have to be. I have acquired so much medical knowledge that I may be able to skip several courses if I ever attend medical school. Kidding about that one.
Also, during this time I gave birth to my second child and became a “Heart Mom” twice over. Yes, my second child, my beautiful baby boy, was also born with a CHD although his circumstances are much different than my daughter’s. You see, congenital heart defects are the most common birth defect, and are as common as Autism. This is a fact I never knew until I had to. It is quite likely that unless you or someone you know has a CHD you probably didn’t know either.
Since most people do not know a lot about congenital heart defects, people often have a lot of questions when they hear of my children’s diagnoses. Here are some things that you need to know about children with congenital heart defects:
1. They are 1 in 100. As I mentioned earlier, CHDs are the most common birth defect. In fact, approximately 1 in 100 babies are born with some form of a CHD. Chances are someone you know has been affected by a congenital heart defect.
2. Not all children with CHDs experience the same things. Congenital heart defects can range from mild to severe. My own children are evidence of this. While my daughter was born with an extremely serious heart defect that was detected in utero, my son’s CHD was not diagnosed until he was two months old. While my daughter’s condition required immediate and invasive intervention, my son’s condition has only required monitoring. While my daughter will need continued intervention and procedures throughout her life, as of now we are hopeful that monitoring is all that is necessary for my son.
3. They are just like any other kids. My children are just like any others. They like playing outside, eating junk food and watching television (unfortunately a little too much). They have the same thoughts, feelings, dreams and worries as any other children their age. Children with CHDs may or may not have physical restrictions. This will depend on their specific condition and circumstances. I am very thankful to say that at this point in time, neither of my children have restrictions due to their heart conditions and are free to participate in the same activities as their peers.
4. They will need lifelong care. Unfortunately, there is no cure for congenital heart defects. There are “repairs,” but most people born with CHDs will need to have ongoing follow-up and treatment throughout their lives. Even if no further procedures are needed, monitoring will be a lifelong necessity.
5. They are strong, both physically and emotionally. Watching my daughter go through what she has been through has humbled me. Two open heart surgeries, cardiac catheterizations, stent placement, and numerous EKGs, echocardiograms and chest x-rays is a lot for any person, not to mention a little girl. These children are tough and have a fight in them that is incredible to see, and their resilience is awe-inspiring.
My children have made me a better person. I learn from their courage and determination every day. I find my strength within them. They inspire and motivate me to appreciate the little things in life and to work to raise awareness in order to help others in similar situations. Most of all, they have reminded me to have hope and to always believe.
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