Human Heart Diagram
Ventricular Septal Defect (VSD)
My child was born with a heart defect, a small hole in his heart which is called a Ventricular Septal Defect, also known as (VSD). The doctors told us it would close on it's own after a few years.
As a mother, I naturally flipped out, but supposedly it would be nothing to worry about. This defect was not found until he was about 2 years of age. This is a little complicated to explain because he also has CVS (Cyclic Vomiting Syndrome. If you would like to come back and read about the Cyclic Vomiting Syndrome. It may actually help someone else too.
My child was very sick about 2 weeks after we brought him home from the hospital. He would vomit everything and choke, turn blue, aspirate, etc. I could not breast feed due to a pituitary tumor that I had, so he was on the bottle. My son was losing weight; he went from 18 lbs to 13 lbs by the age of 9 months.
Our nightmare just didn't stop. They kept saying it was from the defect in his heart and that it would clear up soon as soon as the hole closed. But after more months of complaining and every night in the emergency room, they decided to do more testing.
After having to take him somewhere else to get a diagnosis, they came up with a conclusion that he had a rare form of gastric reflux. In order to keep him from basically dying, they did a surgery on him called a Nissen Fundoplication. In layman terms, they took a piece of the top of his stomach and wrapped it around his esophagus. They had to sew it shut so the food would not go back up and come out.
My son finally started to thrive. He actually sat up when he was 12 months old and took his first step at 17 months. It was so joyous to see that something finally cured him.
A heart arrhythmia is when the heart beat is irregular and beats too fast or too slow, basically, out of rhythm. Normally, having an arrhythmia doesn't cause any problems and doesn't present any dangers, however; there are types of arrhythmia that can be life threatening.
If your heart is beating too fast, it's called having tachycardia. If it beats too slow, it's called bradycardia. It gets serious if the heart can't pump enough blood to the body. Lack of blood flow can damage the brain, heart, and other organs.
Now that you understand a little better of what an arrhythmia is, I will now go into my son's story. I hope maybe this may help some other parent who is going through this, because it took 17 years for this to be diagnosed; from birth. There are two different conditions I will be speaking of, however; please read carefully because one condition offsets the other.
The symptoms of the heart problems and arrhythmia my son had started at about age 2 to 3. Maybe when he was born, we honestly do not know and may never know. Since he did not start being able to run and get active until about 2 to 3 years old, it's hard to say. However; this is the age that he started having prominent symptoms. This is when our life went to hell.
The very first time I can pinpoint that there was a problem was when we went camping. It was about 80 degrees out and he was playing. Not hard, just playing in front of the tent. He turned white as a ghost and vomited profusely for almost 10 minutes off and on. He's a kid and just ate and it was hot, so we thought maybe he ate something bad. We went home immediately and ran to the store and got him some Pedialyte. After about 3 hours of laying down in the air conditioning, he woke up and seemed just great. Back to normal, so it must have just been the heat or something.
Heat Exhaustion Safety Kit- Must Have On Those Dog Days Of Heat
CVS and Heat Exhaistion
Heart related issues and heat exhaustion problems. It seemed my son had some sort of heat exhaustion problem, or a problem of his body and overheating. Every time he would get hot or overexert himself, he would get horribly sick. He would curl up in a ball and cry and just feel miserable. He also had migraine headaches with abdominal migraines. That's where the Cyclic Vomiting came into play.
A few doctors said he had cyclic vomiting, and another said he had Kawasaki Disease, which is a problem with the heart in children. They tested him and that came back okay. So what the hell is wrong with my child then?
I don't mean to keep bringing up Cyclic Vomiting, but as I said earlier, they both coincide. One causes the other is what I was told, (just recently) when we found out about the heart arrhythmia,
Instructions For Heat Exhaustion Attack
Heat Exhaustion or Heart Trouble?
Cyclic Vomiting or Arrhythmia
Basically, I have been given (3) different diagnoses in 17 years. To tell you 17 years of hell in one article is impossible. I will just now go straight to the end of 17 years. After several years of not knowing what my child has for sure; and also just so you know, they did have him on a heart monitor before that we brought home. When he did get sick, we would have to call it in over the phone and they would read it. That was done around 5 or 6 years old.
When he turned 17, the curling up in a ball and crying was no more, he just pretty much learned to deal with it, but he would still get very sick from running around the track at school. He came home from work one day as he just started a part time job. He wanted me to feel his heart as it was pounding very hard. I asked him if he just came from upstairs, and he said no, he was just laying down and got up. It stopped after about a minute, so we didn't think too much of it.
When it happened again 3 days later, I could literally see his heart almost thumping through his skin. I was petrified. We took him straight to the E.R. They did an E.K.G and everything tested fine. They said it could be because he drank a Starbucks coffee. (yes, that's what they said.)
Heart Pounding and Beating Rapidly
One week later, he got home from work around midnight. He walked in the door and his face was beet red. I mean beet red. His eyes had black circles around them and they were droopy. Now, this really wasn't anything we weren't not used to seeing, it was just different, it was worse than I have ever seen in his face. I'm a mother, and you can look at your kids eyes, and know whether he is sick, or Sick.
He asked me to feel his chest and when I did, we immediately ran him back to the E.R. Again, the test came back fine, but they said to get him into a cardiologist as soon as we could, but it wasn't anything life threatening. Well, the word cardiologist and a child, is life threatening if you ask me. I almost needed a cardiologist when he told me that. They mentioned something about possibly the VSD (hole in his heart) could have re-opened, but they weren't really sure. All I know is, It was a nightmare. I didn't know what we were in store for. It's your child, and you have no clue what goes through your mind.
How Blood Flows Through the Heart
Saw the cardiologist the next day, (I work quick when it comes to my child). He said he wanted him to take home the heart monitor and when he felt like his heart was racing, to put it on and he showed him how to use it. He said we can have it for 60 days to see what happens. If he didn't have an episode by then, then we can get an extension.
My son had to go to work that night and almost forgot to take the monitor, but he grabbed it. He didn't do anything vigorous at work, so that wasn't the problem. He got home around 11 pm and I was up waiting for him along with my husband. Again, he walked in the door and was red, black circles, etc. He said, "oh mom, can you grab the monitor for me over there." (Real calmly).
After he got done putting the monitor on, we called it in. We had to wait for the results on the phone which literally took about 5 minutes. When they asked if they could put me on hold for a few minutes, I knew something was wrong. She said she had to call this to the cardiologist and for us to stand by. I thought I was going to get sick to my stomach. The cardiologist called on my other phone and said to get into the office first thing in the morning. She reassured me my kid would be okay and we could wait. I begged for her to see him at 1am.
What Is Tachycardic?
Tachycardia n. A rapid heart rate, especially one above 100 beats per minute in an adult.
SVT (Supraventricular Tachycardia)
What we found out on the heart monitor was that his heart rate got up to 200 bpms (beats per minute). Since the beats went back down to normal after 2 or 3 minutes, it wasn't life threatening, but could be. I don't like this at all. I'm scared for my child and I don't like messing with a heart issue. They did some more testing and found out he had an extra wire in his heart that was misfiring. Again, this is where the Cyclic Vomiting comes in at again.
They said that he may not even have ever had Cyclic vomiting, and it could have been this heart misfire since birth. They cause basically the same symptoms he had. They wanted to do a heart ablation. They said he had an SVT (Supraventricular Tachycardia). He was born with a VSD (Ventral Septal Defect) in which they said the hole closed.
What Happens In A Heart Ablation Procedure
There are surgical ways where they can open you up, like open heart surgery, medicines, or a Maze procedure. My son had the Maze procedure. This is when they use a special catheter to deliver energy that creates controlled lesions on the heart and ultimately scar tissue. This scar tissue blocks the abnormal electrical impulses from being conducted through the heart and promotes the normal conduction of impulses through the proper pathway. One of four energy sources may be used to create the scars: radio frequency, microwave, laser, or cryothermy.
This procedure took about 3 to 4 hours. It was nerve racking to say the least. I was worried sick. Someone going up through his leg (by the groin), and going up to his heart and basically "burn the extra nerve" that was causing it to misfire. He was in the hospital for 2 days, then sent home.
There are a couple informational videos below for you to watch on ablations. Interesting and useful information.
Able To Run And Play After Heart Ablation
Does The Heart Ablation Work?
I can't say it fixed his problem totally with being sick when over heated or exerted; but I can say that it did fix the arrhythmia which needed to be fixed regardless. It could have thrown him into a heart attack. What I can say is that:
- He can run farther
- He can get hotter
- He can run and enjoy himself (whereas before the procedure, he would be sick after running a block)
He still gets horrible migraines and abdominal migraines, not as bad. That is where it goes back to the Cyclic Vomiting Syndrome (Maybe)-All in all, he's healthier, but not perfect. Only God knows for sure whether or not he will ever grow out of this, but I am thankful that finally, after 17 years of fighting for my child, they came down with a conclusion it was his heart; (either directly, or indirectly), and I don't have to worry about his heart.
CVS, is not normally fatal, unless you get too dehydrated, but a heart, you can't mess with. I hope I have helped someone or gave someone some ideas they can check on if you have a child with an illness that can't get diagnosed.
Heart Ablation Procedure
- Supraventricular tachycardia
- NEW! SVT AND ABLATION - Heart & Cardiovascular Disease - HealingWell.com Forum
SVT and Ablation information from Healingwell.com
Heart Problems and Heat Exaustion
Please Leave Your Comments......
Please leave your comments or questions below as I appreciate the feedback! If there is something I can help you with, let me know!
Lisa (author) from Central USA on April 07, 2012:
Thanks Pam-Yes, we've had a few problems. I don't know why they didn't get the SVT sooner. It took 17 years, but we still don't know if he has CVS for sure. 50/50 chance. He still gets sick from over-exertion and horrible migraines, but not as bad as he used to. I just keep fighting
Pamela Oglesby from Sunny Florida on April 07, 2012:
Your family and especially your son have sure had too many years of heartbreak. I do not understand why a cardiologist would not have picked up the SVT sooner. It is not uncommon and sometimes can be controlled by drugs, but the ablation therapy usually works well. I was a cardiac nurse for many years.
I sure hope the future will continue to be better for your son, and I know as a parent how much it hurts to see our children suffer. You covered your sons problems with some excellent information. I wish you the best.
Lisa (author) from Central USA on April 06, 2012:
Thank you teaches. I hope it wasn't very confusing to read going back and forth to the CVS, however; it was important to me and it may help someone else. Thank you for your kind words
Dianna Mendez on April 06, 2012:
So glad that your son is able to enjoy life after such trials and battles. You are right, the heart is one area you can not mess with in life. May he enjoy life fully and complete! A great topic and well covered. Voted up.