Open Heart Surgery - A Toddler's Point of View

I was pounding it out on the treadmill the other day. I lose myself in thoughts on long runs. The thought process began with never ending joy and amazement and thankfulness God has allowed my body to do this. To run. To live. To thrive. I shouldn't be here. That's what they said. The doctors. I shouldn't be alive and there is no way I should be as physically able as I am. I thought about what it took to get me here and it lead my thoughts all the way back to 1995 when I was a 4 year old having my 3rd open heart surgery. Recounting that time was eye opening to even my own adult self at what I was going through as such a little one in a scary time. I thought maybe I could type this blog to help parents of children with CHD's.

First of all, let me start by saying I actually cannot imagine what a parent of a baby with a CHD must be going through. Having a CHD is much much different than being a parent to a severely sick baby. When my husband and I were planning to start a family and hoping to get pregnant, we went into that adventure knowing I had a higher risk of miscarriage, I was high risk, and my baby had a good chance of having a CHD, too. CHD's are already the biggest birth defect affecting 1 in 100 births. Even knowing my chances, I wanted a baby and I thought if my baby did have a CHD, I would be able to handle it because I already understood what that life could look like. While that life is different for each individual, for me, that life has meant nothing much more than no caffeine and no decongestants. I have been very blessed to go from having my parents flat out told I would not survive as an infant to being a marathon running, limitless, mommy, CHD survivor. I thought, (though I would never desire such), that I could handle a child with a CHD.

The time came to do a high risk anatomy scan to check Ellie for any heart defects. This was the first moment that I really began to panic at the thought of my child having a potential CHD. It just occurred to me that her case could be totally different than mine! I had this gut-wrenching feeling that I would not be emotionally strong enough to help my sweet baby if she had a CHD. Something just really changed my feelings. It was then I realized what my parents might have felt and still do.

I was very blessed to have a little baby girl with no heart defects, which still just blows my mind and I can only praise God endlessly for this. Yet, I still look at her and wonder what would have/ could have been? How do parents do this? How did my mom do it? As a little one growing up all the way up until I met my Adult Congenital Heart Specialist as well as my husband, my parents went with me to pediatric cardiology visits. Actually, they still join me occasionally now which is actually quite normal. It is normal because they have been there from the beginning of this traumatic life event and their presence and support as well as their knowledge is the best you can have present with you. As the patient, as a child, my parents showed me equipment used on infants to get an x-Ray. It was tiny; and it was so strange to think of an infant fitting in this contraption. As a child, I thought it was interesting while my parents looked at it with horror. Horror remembering their little baby caught in this contraption whose face coiled with anguish and screams and crying. My parents were horrified watching and enduring this. But they had to. They had to be strong to take care of this very sick baby God gave them. It only occurred to me at age 26 that my parents didn't think that contraption was interesting...it haunted them. The view of a parent and toddler patient are very different. Both are very strong yet very different. And they have to be strong to push them through.

"Pigg-o-stat immobilizing device"

When I was 4 and had my 3rd open heart surgery, I remember many things very very well. It is amazing the memory one can have so young. I remember my parents talking about it before it was to happen. I remember being in our old ranch house in the living room in dim light near bed time with a suitcase that was being packed for me to go to MUSC in Charleston. I remember asking my mom questions, still not grasping what was happening. I was not scared, I was not upset. I was excited to go to Charleston. I knew I was going to see doctors and I knew I was getting a lot of attention and I liked that attention. It still did not register what was going on. I remember a nurse listened to my heart with a stethoscope a day before my surgery and she knew I had pancakes by listening to my tummy!! (I still don't know how she pulled that off, haha! But she was right!) I remember Preacher Reece, family members, and church members who were like family coming to my hotel room the night before my surgery all for me! It felt like a party! I really had no clue what was going on other than I was the center of attention and I liked it. Everybody wanted to hold me, talk to me, play with me. I turn into a little ham when all eyes are on me. I apparently got to rowdy because I remember one of my parents pulling me into our bathroom to talk with me and calm me down so that I would take this time seriously and pray quietly. They saw it as a serious time as parents. As a 4 year old patient, I saw it as a party where everybody was loving on me! I remember my parents taking me over the original Cooper River Bridge back and forth so I could enjoy the view. I remember being really really groggy and it being dark and going on the bridge....I suppose on the way to surgery?....and opening my eyes for a beat to see the architecture of my bridge. I then remember waking up in post-op. It felt like somebody had just slammed the brakes on a car (probably the bed breaks). There was a bright fluorescent light and one of those round mirrors posted at corners in halls. I remember being angry, mad, and mean. I remember I was a fighter. A male nurse (men scared me when I was little) worked with me in post op and he received the wrath of a highly ticked off 4 year old heart warrior being made to do things she did not want to do that hurt. It didn't help him that I was hungry and he wouldn't feed me anything other than ice chips! He gave me a red heart shaped pillow that he wanted me to squeeze. Um, no thanks. My chest has just been cracked open and I don't feel good. In fact I felt down right painful all over. He kindly and patiently, lovingly continued trying to get me to hug that pillow and breathe into a spirometer. I kept telling him "No!" and pushing him away. I chucked the pillow to the end of the bed.....which is amazing considering I just had my chest cracked open. "Look at that Mr. Nurse! I can't squeeze it for you but I sure can throw it!!" My mom was there beside me trying to help the nurse get me to comply. My mom had an impossible role. Here she is looking at her baby. Her sick baby who just had her third open heart surgery. She wants to hold me and make everything better. She would rather it be her. Yet, because she loves me and wanted me to recover a strong kid and a healthy kid, she pushed me. She made me mad. She made me take out ALL of my anger on her. She was a woman who was in need of all the support in the world. I guarantee you from my own patient perspective.....my mom needed more love and support than me. She was in worse pain than me. I PROMISE you this. I KNOW as both heart patient and mother now, that the parents are in far more pain than the baby undergoing the physical trauma. CHD survivors- we call ourselves CHD Warriors. We are warriors. We overcome heart disease. The number one killer of women. 1-3 women. Yet, the parents are the biggest warriors of all because they are the ones who push the warriors through. They take the biggest blows, cuts, pain. I remember my mom stayed with me in the hospital room sleeping on a tiny plastic couch. She felt so bad for me, she made a genuine offer to take me to the Miss America Pageant which I rejected for the only reason being I was mad and hurting! (I love Miss America!) My mom tells me that she remembers her making me breathe into the spirometer and taking walks up and down the halls and those things made me so mad at her. She said I "stomped off" away from her mad at her during a walk and it broke her heart because as I walked away, my head was cocked to one side because it hurt my incision to keep my head up straight. Obviously I was a fighter, and so was my mom for taking on this battle with a 4 year old only feeling bad that she couldn't help me feel better. She wasn't hurting because I was lashing out on her. She was hurting because I was in so much pain. My mom was a fighter for doing what she had to do to help her baby get well. She endured a lot more than me. Both my parents. I as a toddler blamed her because she was the one who supposed to take care of me and make everything better and being such a little girl, it did not feel that she was taking care of me. To parents in my parent's position....do what you gotta do. Your job is to be the strongest warrior of the two positions. You have to be stronger than your child who just battled open heart surgery so that you can face the winds of their abuse, pain, and your own emotional pain watching your greatest love endure something so horrendous. I believe God tasks a special type of parent to be warriors for sick children...all sicknesses. But of course, all parents are truly remarkable and warriors in their own ways.

Parents of a CHD patient. I urge you to seek God in this time and place. I now know as I am a mommy that I have the strength to be a heart warrior, but not a heart parent warrior. I couldn't imagine your role. Seek God in all things but especially in the darkest of times. God has purpose in all things! First, (easier said than done) try with all your warrior strength to be gracious to God for this hurdle. God has a plan and He wanted you to be part of it for something good. Praise Him for that. Secondly, you have to seek God's eternal perspective. For me, God has used my 3 heart defects, 3 open heart surgeries, and the chance for another open heart surgery for SO much awesomeness in my own life and for His glory and I am thankful God allowed me this journey. God allowing these things lead my dad to true salvation in the Holy Spirit. Seeing the miracles God allowed my life lead me to salvation. I've been able to be present for others who are going through these same things and serve a large community. So I encourage you, parents to just lean on God in this. It is also ok to tell Him if you're mad...He already knows. And He loves you and He is not punishing you and there is nothing you did wrong to deserve this as I am certain my own mom believed was our reason for a while.

Remember your little tiny warrior may see nothing past the superficial attention and being made to do things they don't want to do. They are confused as to what this really means. They need to be shown around their hospital, made familiar with medical supplies and equipment, and shown a drawing of an anatomical heart and repeatedly through their life told what is wrong with their heart. It does not have to be big, scientific, or forced. Just help them to find some understanding and comfort. And find a supportive group for yourself of strong people to lean on. Do NOT try to take any of this own alone....you are already doing more than anybody else could ever imagine and you are already amazing. Try to view this time through their eyes and give lots and lots of love. Do not stop being a strong and disciplined parent. For example. Sometime after my 3rd surgery, we were home and I was back to being my pistol of a self. My steri-strips were off my scar. I was being bad and daddy told me if I didn't straighten up I would get a spanking. I mouthed off to him like the best 4 year olds do..."You can't spank me, I had heart surgery!".....He reminded me he in fact could. Hahaha! I also really respected him for that and learned I was not being coddled or crippled in any way. This helped me to really thrive and become an adult who pushes boundaries physically and will not be held back. If my parents had coddled me or crippled me then I would have eventually believed myself to be too weak or "special" to do anything big. My pediatrician told me I couldn't run track. So I just became a marathon runner. I am stubborn and I will break the limits you set for me. My parents really were and still are the best at not holding me back or making me less because I am different and it has really benefit me. I can even remember asking my dad once while we were sitting down and watching TV about a child on the screen who was very very sick. I asked him, "He is sick but not as sick as my heart. Nobody is as sick as me, right daddy?" And he gently but firmly then explained to me that while my heart was not normal it is quite healthy now and there are in fact lots of people and other children in much worse sickness than me. This opened my eyes up wide as a kid to realize that there were people suffering more than I had? It reminded me and taught too, that I was very blessed and I needed to use that for good and see that I am strong and some kids never will be. My parents were warriors and served me well by loving me hard....well, sweetly, and with fun, but also hard. They were the key just after God Himself to bringing me to be the strong physical and spirited woman I am today. I hope this will encourage you parent warriors from a toddler's point of view.

my big sister and my mom

My 3rd open heart surgery