What it means to be a part of the "Zipper club"

My nine year old daughter Olivia recently had her second open heart surgery. Though this journey has been hard for the whole family and we have certainly had some ups and downs. I wanted to share what her scar truly means to her through her words in hopes of helping others who have an older “tween” child if you will and how this led to what we were not prepared for after surgery.

Getting to the surgery day was okay and went better than we had expected. Olivia had little questions and remained pretty calm and quiet leading up to May 8, 2012 which was surgery day. We surrounded Olivia with many family and friends to keep her mind of things the day of surgery. She met with child life specialist Stephanie, whom without I don’t know how we would have got through this whole process. She was an absolute angel to our family and to Olivia. If you have Child Life specialists in your child’s hospital, I urge you to talk with them and your child before, during and after surgery.

Olivia was a true trooper and amazes me every day with how well she handles her heart condition and all the issues that have come along with that. What we were not prepared for was depression and anxiety after her surgery. It was very scary and completely changed our child almost immediately after surgery. She was completely different and sad even though she was getting news that she was doing great and how she was amazing that only 3 days after surgery she was getting to go home. She did not smile, laugh, or even get remotely excited when friends came to the hospital to see her. I began to get very worried that something wasn’t right.

As we came home from the hospital she would cry every day and tell us it wasn’t fair that she had to go through all of this and take all this medicine. She just did not understand it. It wasn’t until she was able to take a shower that I realized what was bothering her. She began to cry the moment she got in the shower and say that she was ugly and she did not look like any of her friends with her scar. My heart began to break for her. As a nine year old girl, you begin to notice these things and as mom I sat and thought what do I say? What can I say to make her see that she is beautiful just the way she is and that God made her that way. She was special! So that is what I began to tell her. She is special and perfect in God’s eyes and my eyes and no one can ever change that. The fact of the matter is we all have scars. This is how I began to explain to Olivia when she would cry looking at her scar and saying it’s not fair because none of her friends have a scar like that. I told her that they may not have a scar that puts them in the “zipper club” but they do have scars. I began to tell her that I have scars even. I have scars on both of my feet from where I had bunion surgery. I also began to tell her a childhood story that I have a scar on my forehead from when I was little and we were at my grandmother’s house in North Carolina playing outside with this big giant black dog. We were running from it and I was not paying attention and ran right into the biggest oak tree in the world. I am still not sure how I had forgotten that the tree was there. J What I am getting at is we all have scars and we all have a story that goes along with them and they are stories that we never forget no matter how young or how old we are or what brought us to them. Whatever the story, happy or sad, they become a part of our lives, our stories. I continued to explain to Olivia, that just like hers, her scar has a story. She has begun to realize that her scar is a reminder of how strong she is and how brave she has been to get to where she is today. And that she is AMAZING! She is not afraid to let it show. She has become proud of how strong she is and it’s just a daily reminder of that as well as to others. She should be proud of her scar and what it represents.

I spoke with her doctor about all of this and how bad it was becoming. He explained that sometimes when you are on the heart and lung bypass machine that it can cause bouts of depression. He also explained that it is common for you to feel sad or depressed after you leave the hospital. These emotions may be the result of not knowing what to expector not being able to do simple tasks without becoming very tired. Temporary feelings of sadness are normal, and should gradually go away within a few weeks, as your child goes back to normal routine and activities. 

So we are working through it and I wanted to share with others who are preparing their child for open heart surgery that this sometimes happens after surgery. We had no idea and we are learning as we go along. Please don’t be afraid to mention any of the signs of depression to your child’s doctor. Talking with a professional is always an option and something we are still considering with Olivia.

Preparing your Child for Open Heart Surgery

Preparing your child for open heart surgery is a scary thing. Nurses have to deal with this stuff every single day and seem to become “routine” to them. Routine?  I think not.  Not only once but having to go through it multiple times and having to relive it all over again is even harder and is far from being routine if you ask me.

The first time Olivia had open heart surgery she was six months old. We didn’t have time to think about what was happening or what could happen. It just happened. And we look back now and wonder how on earth we got through it. But we did get through it with the help of family and friends and Faith in the maker above that it was in His hands the whole time.

But we are preparing for Olivia’s second open heart surgery and she is nine years old this time. So preparing her and us is a little bit different than before when she couldn’t speak or ask questions and understand what would be happening. It has been tough so far. We have already had tears in all of us. So, I sit and wonder. How do I explain to my nine year old what is going to be happening in May? As I sat and thought about this when we found out she would be having more surgery, I realized that first and foremost we have to be honest with her. We have from the very beginning. She has always known that her heart was special and in no way have we ever told her that it would ever be perfect and “fixed”. So, as this journey has begun, we have been honest. Along the way we have had others tell us to wait until about 2 weeks before her surgery to tell her….or tell her just a few days before. But to me that did not seem fair. I know her and I know that she would totally freak out if we waited to tell her just before. So we told her along with her cardiologist. He also felt that it would be best to go ahead and be honest and let her know what was going on. I mean she had to know that something was going on already. We had been to numerous doctor’s appointments as well as seeing specialists upon specialists to figure out that it was her heart causing her issues.

My question now is…how in depth do you answer questions about open heart surgery? A nine year old can be pretty inquisitive. We haven’t had any questions yet but I know they are coming. As I began to research all of this, I came across some info that I thought that someone else who is going through this exact thing as well could benefit from and wanted to share it here.

I found that according to results from studies of developmental psychology show that children are often underestimated in their ability to deal with medical information. These studies show that children can cope with information about their physical state and can deal with stressful events. Additionally, young children of about 2-3 years can be prepared for surgery in a rudimentary way. Giving children, irrespective of their age, only vague or no information about their upcoming surgery seems unjustifiable. Children who are not educated about their surgery have an increased risk of being traumatized after the procedure. They could lose faith in their parents and health-care professionals.

So, bottom line honesty is the key and if you don’t know an answer to a question saying “I don’t know” is okay. You would rather get the answer than answer it incorrectly. Here are some things that I have already talked to Olivia about regarding her surgery.

 "Your heart isn't working as it should, but it can be fixed. The doctors and nurses are going to help your heart work better. I love you and I want this heart surgery done because it's the only way for you to feel better."

"During your operation the doctors will give you medicines so that you will be asleep and will not feel anything. After the surgery is over, you might feel sore, but your nurses will give you medicine to make your pain go away."

"Right after the operation you'll stay in a special room and get extra attention from the nurses and doctors. I'll be able to stay with you very often and I'll always be nearby. After you've gotten stronger, you'll move to a regular hospital room. When you're there, I will be able to stay with you almost all the time."

"While you're staying in the hospital, you'll meet other children who are also getting well after their heart surgery. They'll be getting ready to go home. You'll be able to go home, too, as soon as the doctors say you're ready."

This is a learning process for all of us even though she has had open heart surgery before. It doesn’t get any easier and those who have been there know that it is anything but routine no matter how many times you go through it.