Updated: Nov 9
I had open heart surgery at a day old.
I, of course, don't remember this huge part of my story firsthand, but my parents do and as you would imagine, I've heard it quite frequently throughout my life. So today, in honor of Congenital Heart Defect Awareness Week and American Heart Month, I'm sharing my heart story. My goal in this article is to answer the questions I've been asked over the years and hopefully encourage mommas of heart-babies and kids growing up with a congenital heart defect.
My parents were 21-year-old college kids facing first-time parenthood. That's a scary thing in itself, but it got much scarier when, within minutes of my arrival, I turned blue.
It was quickly determined that I had a serious heart condition requiring immediate surgery.
I was flown from Lubbock, Texas to Dallas Children's Hospital where family and friends were already waiting on me as my parents would follow on their own flight.
Note, this was back in the 90s before everyone had cell phones. They had no way of knowing if I had landed, if I had survived the flight, if I was stable enough for surgery... But, God does cool things.
As they were flying out to meet me in Dallas, a stranger came up to them and said, "They've started her surgery and she's stable." That's it. Not, "Are you Chris and Susan Horton?" Not, "We have a message from Dallas Children's." Just, "They've started her surgery and she's stable." That's God at work, giving His people peace.
I was diagnosed with Total Anomalous Pulmonary Venous Return (TAPVR). Basically, that means the pulmonary vein that should have delivered oxygen from my lungs to my heart was connected to the wrong side of my heart. Therefore, I could not oxygenate my body and you kinda need oxygen to live. As with all cases of TAPVR, I also had a hole in the wall between the right and left upper chambers of the heart known as an Atrial Septal Defect (ASD).
Thankfully, God's hand was all over this thing from the very beginning. (Psalm 139:13-16)
Had I been born just a year or two earlier, the medical technology that saved my life would not have existed and I would not be here today. God's timing is perfect.
God worked through Dr. Hisashi Nikaidoh and his team to save my life when I was barely a day old. In short, they snipped the vein and connected it to the correct side of my heart. They also closed the ASD. The incision was patched with a portion of my pericardial sac. Fun fact about the pericardial sac, it serves no known purpose other than being used for surgical repair sites.
"It's as if God put it there for that purpose alone," said Dr. Nikaidoh.
Dr. Nikaidoh and my family still exchange Christmas cards each year. I sent him an announcement at my college graduation, and I'll be sending him a wedding announcement soon. He is the man God chose to work through to save my life as well as many others and for that I will always be grateful.
After my surgery, I spent just three weeks in the hospital. My parents were initially told I would be in the hospital anywhere from six weeks to six months.
At home, I was on medications and feeding tubes. If given too much or too little of my medication I would die. Every feeding and diaper had to be closely monitored and recorded. I could not come in contact with anyone but my parents. My mother could not finish her college degree as she needed to stay home with me for the first couple years of my life. My parents sacrificed immensely and if they hadn't I wouldn't be here today.
The first two years of my life were extremely critical. There was no guarantee that I would survive and additional surgeries were possible.
At my 18-month-old routine heart check-up the vein's repair site had narrowed. If narrowing continued there would be another surgery and even if it stayed the same size surgery was still a possibility. The doctors said the vein actually needed to widen, but this was medically impossible.
Impossible. That's an intimidating word.
But, thankfully, we serve a God who is not limited by impossibilities. My parents chose to put their faith in Him. They prayed. Our friends and family prayed. Their friends and their families prayed. Lots of people prayed.
Six months later, at another check-up, my doctor announced the repair site had WIDENED. That is faith. That is God. That is a miracle. That had never before happened in medical history.
Several more doctors came into the exam room that day to marvel at the wonder that is God's handiwork. That day lives were changed because God worked through a baby with a congenital heart defect. There are no impossibilities with God. Period.
I continued with my heart check-ups every two years throughout my childhood. These typically consist of the usual stuff like blood pressure, heart rate, listening to my heart/lungs, etc. along with an EKG and an ultrasound of my heart to check on the repair site. Initially, the idea was that if I could finish growing without issue, I would be in the clear.
The repair site grew with me and I had no problems or major restrictions growing up. It was advised that I didn't fly on a plane until I was grown. I had and still have asthma, probably due more to a bad case of RSV when I was young than anything else.
I was cleared for, and attempted, all kinds of sports. Unfortunately, God did not bless me with the ability to catch, throw, or hit anything... Nor, am I coordinated in the very least. I don't think I can blame that on my heart. Despite my lack of ability, I had fun trying my hand at soccer, softball, tennis, basketball, tap dance, ballet, and baton.
Soccer was my favorite because I could run and I could kick (and occasionally throw an elbow). Every game, there was my mother on the sidelines, reminding me to "check my nails." Purple/blue nail beds mean poor circulation/oxygenation. Circulation and hydration were things I learned to check on often and could easily determine if something was off. I never realized this wasn't the norm. I just figured every kid monitored these things.
The heart check-ups continued until I was 18. At my 18-year-old heart check-up, I was released. I would only need to be monitored again during any future pregnancies. This is what my parents had been waiting for my whole life. Making it through the first two years was huge, but throughout my growing years there was always the little possibility that the repair site wouldn't grow with me and I would need another surgery. We made it.
When I was 22, I noticed my asthma had worsened. As my heart and lungs work pretty closely together (imagine that), I decided to call up my pediatric cardiologist just to check things out. Turns out, since they actually don't know much about my condition long-term (remember, I'm one of the oldest people to survive with this issue), they had decided to no longer release patients at 18. So I'm back to my check-ups every couple years. I will also continue seeing a pediatric cardiologist as most adult cardiologists haven't dealt with my condition.
At that appointment, I learned that while my asthma probably was acting up, I also have scar tissue surrounding my lungs which does not allow them to fully expand. This isn't a serious problem at all, but it does explain why I so easily get short-of-breath or feel that I'm not getting a full breath.
Someday, I will be monitored throughout any future pregnancies and followed by a high-risk OBGYN. This will allow the baby's heart to be monitored from the beginning. They do not expect my children to have my condition, but it's still a possibility. They also do not expect me to have any issues during pregnancy/delivery other than increased pressure on my lungs and therefore increased shortness-of-breath. They've told me to be prepared to potentially be put on bed-rest towards the end of a pregnancy. Honestly, none of that is a big deal.
If I ever end up needing another heart surgery it will likely be late in life, and probably wouldn't be anything more than a stint placement. But, that's pretty unlikely. I'm expected to continue living a healthy life free of further complications.
Often when I mention my heart surgery, I'm asked if I have a scar. Why people feel the need to ask this, I don't know, but they do. So, yes, I have a scar. Several actually. I have the scar in the middle of my chest where the incision was made, small scars on either side of my chest, and a small scar on each thigh where tubes were placed. I also have varicose veins around my hips. These are less noticable than they were as a kid. The varicose veins are due to IVs I had while in the hospital. I had 7 in total at one time including one in my head and both feet. (Baby me was way tougher than adult me...) My incision scar could be much worse than it is, it's actually pretty light and it isn't raised at all. I attribute this to my momma putting Vitamin E Oil on it every single time she changed my diaper. I'm thankful for that.
I've never known life without my scars so most of my growing up they didn't bother me. I had a couple years around junior high age that they bugged me a little bit, but that's a pretty normal age to feel self-conscious anyways. Now, I honestly feel like those scars are pretty awesome; they tell a big story. Plus, I'm clumsy enough I've obtained plenty more scars primarily without cool stories behind them.
In two weeks, I'll be walking down the aisle in a white dress with a v-neck. Honestly, I initially hesitated to wear a v-neck dress because my scar would be visible, but I don't know why I wouldn't want that. That's an enormous part of my story. The fact that I am here today and get to walk down the aisle to marry the love of my life is an incredible blessing I was never promised. I should celebrate that.
In short, I am beyond blessed. Not only have I lived a healthy, full life, but I was given an amazing testimony from day one. Yes, God allowed me to have a heart condition, but He has used that condition to bless me greatly and bring glory to His name repeatedly throughout my life. The scar on my chest is a constant reminder that God has big plans for me and every single day is a gift.
To the heart babies' mommas, I'm praying for you. Our God is awesome and He can heal hearts. He can give us healthy rich lives. I am living proof of that. Thank you to all those of you who prayed for me, my parents, and the medical team caring for me.
To God be the glory. Happy CHD Awareness week!
Congenital Heart Defect - An abnormality in the heart that develops before birth.
Total Anomalous Pulmonary Venous Return (TAPVR) - According to Cincinnati Children's, "The pulmonary veins are the four blood vessels (two on each side) that return oxygen-rich blood from the lungs to the left atrium (left upper chamber) of the heart.
TAPVR is a rare congenital heart defect in which all four pulmonary veins drain to the right atrium (right upper chamber) by way of an abnormal (anomalous) connection."
Atrial Septal Defect (ASD) - According to Cincinnati Children's, "All types of TAPVR have an ASD. An ASD is a hole in the wall between the right and left upper chambers of the heart. This hole will allow some oxygenated blood that has entered the right atrium from the pulmonary vein to go across to the left atrium and out to the body."
1 in 7,809 U.S. Babies are born with TAPVR each year. (CDC)
TAPVR may be diagnosed during pregnancy through a fetal echocardiogram (an ultrasound of the baby's heart and major blood vessels). However, TAPVR is most commonly diagnosed at birth. (CDC)
To learn more about TAPVR visit, https://www.cdc.gov/ncbddd/heartdefects/tapvr.html.