Hole in baby's heart

[Dawn in Ohio]

I found out yesterday that my one month old baby has a hole in her heart (ventricular septal defect). Do you have any experience with this? She will be watched closely by the cardiologist and hope the hole closes on its own. If not she may need surgery. The hole is 5mm. If your child has had this condition, do you know how big the hole was? Did it close on its own? What symptoms did you see in your child? If your child had surgery, how old were they when they had it done and how tramatic was that experience? I should have asked more questions of the doctor yesterday, but didn't.

[DB in NJ]

:grouphug: I have no experience with this, but I'll be praying for you.

 

I know how hard it is to think of questions to ask when you have the doctor with you!!! Seems our brains get all muddled. Write down your questions and call the doctor.

 

:grouphug:

[Tammyla]

:grouphug:Sending out hugs and prayers. My only experience was a friend's baby when I was a child. I remember praying and that it healed without surgery. Maybe I can ask my mom if she remembers any of the particulars.

 

I found out yesterday that my one month old baby has a hole in her heart (ventricular septal defect). Do you have any experience with this? She will be watched closely by the cardiologist and hope the hole closes on its own. If not she may need surgery. The hole is 5mm. If your child has had this condition, do you know how big the hole was? Did it close on its own? What symptoms did you see in your child? If your child had surgery, how old were they when they had it done and how tramatic was that experience? I should have asked more questions of the doctor yesterday, but didn't.

[TraciWA]

I myself was born with a hole in my heart. It closed up on its own. I vaguely remember the many doctors visits growing up. :grouphug: As you go through the waiting and I will keep you in my thoughts and prayers.

[Sugarfoot]

One of our nephews had surgery to repair something like this when he was a baby. I can't remember all of the details, (he's 5 now:)), but they watched it for awhile and then decided on surgery when things hadn't changed. He was less than a year old when they did it. His was fairly major surgery. It was hard on the family, but he recovered quickly. He has a scar near the side of his chest. He is now one of the most active children I have ever known and is perfectly healthy. Interestingly, one of his sisters had something similar, but hers closed with some kind of medication in the hospital right after her birth. I'm not sure what the difference was.

[fshinkevich]

This happened with both my niece and my best friend's son. After looking into it further my BF learned that it is actually very common, and often genetic. Turned out her brother and a whole slew of family members had the same problem.

 

None of them had to have surgery to correct the problem, even my niece whose was a little more complicated than most, and they are all so healthy and active you never would have known. Hopefully that gives you some piece of mind while waiting.

 

Best wishes for you, your little one, and your family.

[lori in tx]

I don't know if my son had this exact condition but he does have a hole in his heart, and still does he is 13 yo. When he was about 9months old we had to go down to Children's and they did some testing and said it was fine but small and it might close it might not. So every time we go to a doctor that doesn't have his records they listen to his heart and then look at me funny:001_huh: and I go ohh yeah I forgot to tell you his a hole in his heart (because I really do forget until the panic look greats me).

 

I would write down questions and put a call into the office asking for a call back, our doctor would call back it might be late but he would call back

hth

lori

[MyThreeSons]

I was too shocked to ask the right questions. The doctor heard it at his 2 week checkup. She had me listen thru the stethoscope, but I couldn't hear the whistle she said was there. I don't know how big his hole was, but the Dr. said that by the pitch (?) it was "small".

 

We were told surgery might be needed at about 1yo if it hadn't closed by then. We were told to watch for unusual sweating, which could indicate a problem. It closed up on its own, I guess, because there's no evidence of it anymore. I hadn't even thought about it in quite a while.

 

He is now 18yo, and other than several knee injuries from playing soccer, is a very healthy young man.

[TracyR]

My daughter has a moderate sized( 5mm) ASD ( atrial septial defect) in her heart as well. She hasn't experienced any symptoms at all with having a 5mm defect so he really shouldn't be. We saw the cardiologist at first every three month or so . When she turned a year old he has told us to come back when she is 3. If its not closed up then she would need surgery.

 

With most holes they can do cardiac catheriziation which is not very invasive at all. It just all depends on the location of the hole in the heart though. As if my daughter's doesn't close up she will need open heart to repair it due to the location of hers . A cath won't reach it. So we are praying it closes up on its own. But if it doesn't its just another surgery she'll have to go through ( she's had 4 far #5 will be in October on something else).

[Heather]

FWIW, I have VSD. I still have a visible hole. The only way it has ever affected my life is when I have any major medical procedure (e.g. childbirth, surgery, etc.) I have to take antibiotics. The ADA used to recommend antibiotics before routine dental procedures, but they removed that recommendation a couple of years ago. VSD is actually not all that uncommon and the hole usually closes up on its own.

cnn article (one of many out there thanks to google )

[Hen]

my 4th baby had vsd and also aortic bicuspid valve....I do remember being so shocked that I forgot to ask any questions, except if it was unsafe to ever let her cry! We visited the cardiologists every couple of months. We were told that the hole might close on its own, they never said how big it was. It did close right before her first birthday.

 

I would strongly suggest that you write down all your questions, so you can remember to ask them next time you are in.

 

Her heart defects upset me greatly (not because of symptoms, but because I was worried about her futre), but yet, I was very thankful each time I was at the cardiologists- that it wasn't a more severe one, when I would sit in the waiting room and see the other children who looked ill and even sometimes had oxygen tanks.

 

hugs to you.

[Amira]

My older son had two holes. I can't remember the particulars, but they closed on their own and never caused him any problems. It really is common and nearly always completely harmless.

 

Still, it's scary to hear that. How can it be okay to have a hole in your heart? But usually, it's just fine.

[Dawn in Ohio]

Thanks for sharing your experiences. It does help to hear your stories. Especially knowing that the holes frequently close on their own. I will try not to worry too much. (Dh and I are both hypochondriacs to some extent. We have been noticing how rapid Grace's respiration is. We have been wondering if it was a problem. We talked to a friend at church who is a nurse. She said not to worry. Then I find out that Grace has a hole in her heart and that the rapid respiration is a symptom of that! So we aren't crazy!! Now I wonder if her difficulty with breastfeeding at the beginning may also be related to this problem.)

[RebeccaS]

T Now I wonder if her difficulty with breastfeeding at the beginning may also be related to this problem.)

 

Possibly if she was tiring out and not feeding enough. My second dd was born with a vsd. We were told to watch for her becoming tired when feeding. For Grace, it just wasn't an issue. She was such a stinkin' chunk. We often joked about how much bigger she might have been if she didn't have the vsd. It did close on it's own when she went in for her 6th month cardiology visit. Hers was so minor that even the cardiologist was surprised that the pediatrician found it at birth. Now, my ds was another story. He came with a av canal defect (both vsd and asd) and he needed surgery at 2months of age. But that's another story for another day. Good luck!

[Sue G in PA]

:grouphug: Dawn. No advice but many prayers that this hole closes on its own so your precious baby won't have to undergo surgery.

[Ottakee]

I had a VSD repaired at 3 1/2 years old. I was a "blue baby" as I had the VSD and PDA (patent ductus arteriousis--spelling is likely off).

 

I had the surgery 34 years ago when it was very experimental. We moved from SC to MI to have it done. I have a patch over the hole. My scar is very large and I was down for many weeks after my surgery.

 

Now though, things are VERY different. They can see with ultrasounds exactly how big the hole is, etc. The surgery requires just a tiny little incision and I think the child goes home in 1-2 days.

 

Did you see a pediatric cardiologist? If not, seek one out. Likely if it is small they will just watch her and monitor it. Don't hesitate to call the office back and speak to a nurse or social worker to ask your questions. They are very used to parents who are overwhelmed with the news and need to call back later.

 

As for me, I am doing very well. I am active, not on any medications, go horseback riding almost every day and lead a totally normal life. I was never athletic but that was not related to my heart problems but rather my lack of coordination.

[Dawn in Ohio]

Possibly if she was tiring out and not feeding enough.

 

Thanks, Rebecca. That was what I thought. Now my daughter is breastfeeding better. Like your daughter, she is gaining well. In fact she's getting downright chubby. She is just a month old and has gained over 3 lbs. So at least that isn't a concern.

[Alice]

VSDs often close on their own. If they don't, and are small they are not always repaired. You can live a completely normal active life with a VSD, but will need antibiotics before certain dental and other surgical procedures. If it does not close but needs surgery....it is major surgery in the sense that it is cardiac surgery which is always a big deal, especially if it is your child. However, it is a very simple procedure from the viewpoint of the cardiac surgeon and the kids usually do very very well and recover quickly.

[Dawn in Ohio]

I had a VSD repaired at 3 1/2 years old. I was a "blue baby" as I had the VSD and PDA (patent ductus arteriousis--spelling is likely off).

 

I had the surgery 34 years ago when it was very experimental. We moved from SC to MI to have it done. I have a patch over the hole. My scar is very large and I was down for many weeks after my surgery.

 

Now though, things are VERY different. They can see with ultrasounds exactly how big the hole is, etc. The surgery requires just a tiny little incision and I think the child goes home in 1-2 days.

 

Did you see a pediatric cardiologist? If not, seek one out. Likely if it is small they will just watch her and monitor it. Don't hesitate to call the office back and speak to a nurse or social worker to ask your questions. They are very used to parents who are overwhelmed with the news and need to call back later.

 

As for me, I am doing very well. I am active, not on any medications, go horseback riding almost every day and lead a totally normal life. I was never athletic but that was not related to my heart problems but rather my lack of coordination.

 

Thanks so much for sharing your story. I bet that surgery was very serious when you had it. Yikes! Even now, it sounds scary to me, although I know it is quite common. We are seeing a pediatric cardiologist. I don't know how "good" he is, but he is at a large Children's Hospital with a good reputation. He took plenty of time to talk to me and was very kind and reassuring. I will be seeing him again soon and will make sure to ask all my questions then.

 

Thanks again for taking the time to respond. :)

[wheezie]

So glad to see you're seeing a pediatric cardiologist for it. My son had HLHS, which we were told was the worst heart condition you could have. He didn't survive through surgery, but again, his was a major defect. (basically the entire left side of his heart didn't work).

 

I know how scary it is when there's something wrong w/ your baby's heart. :grouphug: Prayers that it will correct itself, and that she won't have any lasting trouble.

[Dawn in Ohio]

So glad to see you're seeing a pediatric cardiologist for it. My son had HLHS, which we were told was the worst heart condition you could have. He didn't survive through surgery, but again, his was a major defect. (basically the entire left side of his heart didn't work).

 

I know how scary it is when there's something wrong w/ your baby's heart. :grouphug: Prayers that it will correct itself, and that she won't have any lasting trouble.

 

:grouphug::grouphug: Hugs to you. I am so sorry for your loss.