Seeking Moms with a Child Who Has VSD

My daughter is 4-months old, was born with a heart murmur and after an echo was told it was a VSD (at about 2-months old). We just had another check up, our doctor says she can still hear the murmur, but it is small and won't need any kind of surgery. We have another echo scheduled next week, and if all is OK (the hole is not close to the ventrical) then we won't have another cardioligist appt until she is 3-years old. Odd are, the tell us, that it will close within a year to 3-years. And, even if it doesn't, no surgery needed and no real affect to her every day life. Will only have to take antibiotics when going to the dentist.
I think time will be the best test. They told us, all babies are born with holes in their hearts, some just close slower than others, and some never close. Time will tell.
Good luck, I know the worry you are going through, it is all to recent for me.

L. P.
mother of a 4-month old baby girl.

Hello,

My son is 13 months old and just had his large VSD repaired. I was a nervous wreck before his surgery. I felt, angry, sad, and depressed. I cried almost everyday thinking about what had to be done. The surgery lasted 2 1/2 hours and he came home in 3 1/2 days from the hospital. He is doing so great!! It is like he never had nothing done to him. The only restriction is that we can't pick him up by his arms for three weeks. I am so pleased at how well the surgery went. God took care of us!!! I just am so thankful for the surgeons that can take care of this.

Good luck to you!! I promise babies do much better than adults!!! Keep the faith!!

Hi L.,

I am going to assume you are speaking of a Ventricular Septal Defect (heart defect for those that are curious), I have one still and my daughter had an ASD - Atrial Septal Defect when she was born. They also suspect I had an ASD that resolved. My daughter grew out of hers in about three years. I still have mine (just VSD) and I am perfectly fine. I have to take antibiotics when I have dental work, very very important when you have your teeth cleaned because that in particular stirs up bacteria. I do triathlons without any problems so it never slowed me down physically. Strep throat is also something to get treated right away. Back in the old days they would give me the antibotics before test results were in just in case but with the rapid strep tests you know right away. I know it can be a lot to hear about defects in the heart but with proper monitoring your child should be fine. By the way, my daughters doctor was a Loyola in Oak Brook ( Dr. Vittulo SP?) and she was the best doctor my kid could have ever had. They were so awesome there.

I still get tested every once in awhile (5-10 years) but all it shows is that it is still there and that is about it. I get ultrasounds, stress tests, EKG etc. nothing invasive.

S.

My friend had a son born w/ a VSD and it closed w/in a year. They went to Children's. I was diagnosed w/ a vsd during pregnancy and i'm fine. I get an echo every other year and see my cardiologist every year. Same antibiotics at previous poster. I'm sure all will be well!

I do not have a child with a heart defect, but in his early 30's my husband was diagnosed with a PFO, which is a cousin to an ASD. He was having severe migraines, which are sometimes a symptom, which is how the problem was diagnosed. We have opted not to close the defect since the migraines seem to be happening less frequently but if your child's VSDs are severe and need closure, no doubt you will learn that there are several options. If the holes are in a place where they can be reached by a device (rather than needing open heart surgery) Dr. Hijazi at University of Chicago hospitals is the worldwide leader in pediatric use of the Amplatzer occluder device. Basically, there is a little wire umbrella-shaped device, sized to fit over the ASD/VSD, that collapses so that it can be inserted via catheter. The surgeon will do a vein cutdown in the groin area, insert the catheter into the circulatory system, thread the device up and into the heart, position the device over the VSD, and close the hole. This is the preferred method of treatment since there is no cutting of the heart muscle. There are many other surgeons who can do this, and there are even competing devices, but at the time that we did our research, which was about 5 years ago, Dr. Hijazi and the amplatzer device seemed to be the leaders in the field. Good luck!

My son was born with hole in his heart, severe pulmonary hypertension and a hole in his diaphragh. He ended up spending 13 months in the hospital. They told me the hole in his heart was the least of his problems and that many many people live with it all the time. However, they did place a stent into his SVC because he had narrowing of the viens preventing his heart from getting blood. Once he got that stent he was a different baby.

They have come so far these days with Medicine. There is a website that I belong to called "Saving little hearts". There are tons of success stories there and they raise money to support research for heart defects. My son's primary issues were lung related but I still keep up with the Saving little hearts.

L.,

My son (now almost 3) was born with a VSD. He went through several echos in his first year. His hole was not very big but it wasn't tiny either. At then end of his first year, the hole had still not closed and it was of a significant size that it would affect his health/ability to do things later on in life. He went through surgery right after his first birthday and is now doing GREAT!! I know what you are going through right now!! Until he had his surgery his condition was always at the back of our minds though we tried not to dwell on it too much. The surgery time was probably the hardest thing we ever did as parents (just because he's our little baby and we didn't want anything to hurt him). But the surgery was the best thing we could have done for him. Our daughter who is almost 7 months now is born with a PFO (kind of like an ASD). It does not look like she will need surgery though. We will find out next year. Our cardiologist is Dr. Andrew Griffin at Rush Presbyterian. He used to be at Loyola (which is where my son had his surgery - EXCELLENT EXCELLENT hospital and childrens ICU). Dr. Griffin is AMAZING!! The best!!

If you have any other questions at all - please feel free to email me. I know how helpless you feel! Hang in there! It'll be alright! A congenital heart defect is one of the most common birth defect (even more common than Down's syndrome) and a VSD is the most common of those heart defects.

All the best.
Aarti.

My 3 year old was born w/ 1 VSD, and extra branch to one of his arteries,and a murmur. By his first birthday it had all cleared up, and he is a health wild boy. Our doctor was Dr. Sunthorn at Hope/ Christ hospital. He was fantastic. Just after my sons first birthday he had a very extensive ultrasound to examine his heart and it was all healed. No signs of the VSD, no extra branches to arteries. The worst thing was holding down a 1 year old for the ultrasound (and the worrying for an entire year). I wish you and your family luck. My family will keep you in our prayers.