Hey everyone!!
So I want to take a little time today to talk to you about the number one birth defect in America. Can you guess what it is out of these 5 choices 1. Kidney Reflux 2. Torticolis 3. Cleft Palate 4. Congenital Heart Defect 5. Congenital Deafness or Hearing loss. If you guess number 4 you would be correct. However a heart defect is usually the last thing on a new parents mind. They worry about wether their son or daughter will have 10 fingers and toes, whether they will breathe on their own and be all pink when they arrive. They don't think about they organ that pumps blood to make those lungs be able to breathe or gives their baby that pink color. In reality THEY SHOULD!!
Congenital Heart defects are the number one birth defect in America!! They often run in families but not always. It is very possible to have a child with a CHD (congenital Heart Defect) and have no family history. CHD's are a very large category and there is not just one defect. The defects in this category range from holes in the heart to enlargement and wasting away of the heart muscle for unknown reasons. The treatment for a CHD depends on the type of CHD and the severity of it. Treatments range from just watching the CHD to medication to surgery.
Let me tell you my story.
When I was born everything seemed perfectly normal. I spent the normal amount of time in the hospital and then came home with my parents. At my one month check up my pediatrician noticed that I had a heart murmur and that my pulse was a bit fast. He decided to just watch it knowing that it could be nothing and sent us on our way. Over the next three months he continued to monitor my heart and my pulse for anything abnormal. One day when I was 4 months old my mom took me in to the clinic for an ear infection, my regular pediatrician wasn't there but another doctor was and he listened to my heart after checking my ears. He noticed the murmur and the fast pulse. He asked my mom if he could do an EKG. He explained he had thought about becoming a pediatric cardiologist and though he was sure the test would show nothing he wanted peace of mind. She said yes and they did the EKG. He said it looked ok but that he was going to send it to the Children's heart clinic for further evaluation. Well when my mom brought me back in for check in from my ear infection she asked my pediatrician about it. He asked why it had been done and when she told him he immediately listened to my heart, and then ordered a chest x-ray and another EKG. These test confirmed what he feared. I was now in congestive heart failure. He called the heart clinic talked to them and started me on meds and got me an appointment the next day.
The next day my parents took me to see a pediatric cardiologist by the name of Dr. Singh. Dr. Singh told my parents he suspected based on the symptoms that I had congenital Cardiomyopathy but that he needed to do a chest x-ray, EKG and an echocardiogram to be certain. After all the testing it he was suprised but happy to tell my parents that although I did have something wrong with my heart, It was not nearly as bad as he had thought. I had what is called an Atrial Septal Defect or ASD. An ASD is a hole in between the two upper chambers of the heart. He kept me on the meds I was on for a month had me check in with my pediatrican every week and come back in a month. A month later I wasn't any better and they knew surgery was my only option. At this time the only surgery FDA approved for ASD's was actually opening the chest and patching the hole. I was scheduled for surgery a month later. So at the age of six months I underwent open heart surgery to fix the hole in my heart. Dr. Singh and the surgeon that did my surgery still say that it is the biggest hole they have ever seen. It was bigger than a quarter in a baby's heart.
Now I am doing well. I check in with Dr. Singh every 2 years or so and I will see him when I get pregnant or a partener of his if he has retired by then because he is in his mid to late 70's now. I respect him with all my heart and soul and I know I owe my life to him and Dr. Hellsethe who bless his soul is now longer with us. For me I know my kids have a 50% chance of having a CHD because I had one and that chance gets greater with every kid I have that is born with one. But whether you have one or not you need to be aware that this is possible and that you are not immune to it because you don't have a family history.
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I was also born with a Congenital Heart defect. Everything was fine when I was born but when I went in for a check up at 18 months my doctor found a heart murmur and sent me in for some testing. After being sent to a specialist and having an EKG and an echocardiogram I was diagnosed with an atrial septal defect (ASD) and a ventricular septal defect (VSD). My parents were told that they were small and that there was no need to perform surgery to close the two holes, instead they were just going to monitor the holes over time to see if they would close on their own. I am now 19 and I still have the two holes in my heart. Up until the age of 18 I had been going in to see my cardiologist and to have an EKG and echocardiogram done to monitor the holes in my heart but now that I am older I will be going in every 5 years to have them checked. At my last visit I was told that the holes were still there and that they were the same size and had not changed, also that there is still no need to close the holes b/c closing them could actually cause me more harm than leaving them, if they get bigger or start affecting my daily activities then I will need to get them closed. I would like to thank Dr. Guiffre for taking such good care of me over the years and would like to thank him for all of the great things he does for the children in the cardiology unit at the Alberta Children's Hospital and those who are like me and just need to be monitored over years. I would also like to let partents know that eventhough your child has a CHD it does not mean that they are going to have to have major heart surgery or that your child will pass away, not all CHD's are deadly or require surgery infact many people who have a CHD live their life to the fullest with little or no affects, they are still able to run and play and do what ever they want to do in life. Also more people need to be aware of CHD's and how common they are.
Abott463,
I have to say I agree with you. Not everyone with a CHD has to have something done about it. I had to simply because mine was so bad, but that doesn't mean I haven't had a completely normal life. The only things that have been different is that I had to go in to get it checked every so often, but my cardiologist told my parents never to limit me because of cardiac worries. The only thing that he ever told me I couldn't do was gymnastics and that was because after I had been doing it for about 2 months I went in for a routine check up and I had a huge bruise on my heart and the starts of congestive heart failure again. So he made me stop gymnastics, put me on a halter monitor and meds. Since then everything has been great. But yeah No it really doesn't have to affect you life much unless you let it. For some people it obviously does if theirs is very very severe.
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