https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sun, 17 May 2026 17:40:13 +0000 https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2709352 Mon, 13 Mar 2017 09:34:02 +0000 Miss Flamingo 2709352@https://boards.hellobee.com/ <p>My younger brother had it. He was monitored as a young kid but by 5 it didn't need any extra monitoring. He is a healthy adult now! Good luck! </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2709336 Mon, 13 Mar 2017 09:03:13 +0000 littlebug 2709336@https://boards.hellobee.com/ <p>D had an ASD, so atrial not ventrical. I'm not sure if there's a huge difference as far as treatment, symptoms, etc. He was monitored by a pediatric cardiologist every 6 months from when it was discovered (pediatrician heard a murmur at 9m) until he was 2. At 2, the cardiologist said it hadn't closed and recommended we meet with a pediatric cardiac interventionalist to discuss our options. We went to CHOP and the interventionalist recommended a closure by catheterization. He had that done when he was just shy of 3. We spent one night in the hospital and by the time we got home the day after surgery, he was back to himself. Just 2 days later, we noticed a HUGE increase in his energy. Before the closure, he was always very low-key, liked to sit around and read books and watch movies. After the closure, he's like a new kid. Now, looking back, it is pretty obvious that the leakage was affecting him much more than we were aware. </p> <p>It's been almost 18 months since the closure. He's still monitored by the cardiologist every 6 months, and at his next appointment we'll stretch it out to yearly. His hole was oddly shaped, so it's not completely closed, and the cardiologist isn't sure if it ever will be. We're hopeful that tissue will grow and connect the device to the bottom of the hole, but it's no guarantee. He will continue to require antibiotics before any dental work (even cleanings) for now, possibly for life if it never closes completely. For now, the cardiologist isn't concerned about the leakage - his heart has gone back to normal size (so no enlargement by working too hard to manage the extra fluid) and the leakage is minimal. </p> <p>Feel free to reach out if you have any questions. Like I said, I don't know exactly how similar ASD and VSD are, but either way - your child's heart is affected and that's scary! Wishing you lots of luck and sending hugs. :heart: </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2709263 Mon, 13 Mar 2017 07:15:44 +0000 milano14 2709263@https://boards.hellobee.com/ <p>@Ajsmommy:<br /> DS2 has a VSD (he'll be 3 next month)...<br /> How was it diagnosed?<br /> Like you it wasn't diagnosed before birth. It was diagnosed when he was 2 weeks old. A murmur was detected while we were in the hospital after birth and had an echo with a hospital tech a few days later. But nothing alarming was found and we scheduled an appointment for 3 weeks later with a pedi cardiologist. I was at a pedi appt when he was 1.5 weeks old because we were having issues with latching and him eating enough. At that point I mentioned that his breathing seemed a little quicker than normal. The pedi examined him and immediately called the pedi cardiologist. Our appointment with him was moved up to the following morning.<br /> What had had to be done?<br /> He had a moderate sized hole so the pedi cardiologist's protocol for that is monitoring. For the first 2 months of life we saw the cardiologist every 2 weeks, then went to every month for the first year of life. After the first year we were 6 months and now we're every year.<br /> Were there other issues attributed to the vsd?<br /> The latching, not eating enough issue was because of the VSD. He didn't have enough lung capacity to eat for long periods of time nor the strength to do the work required to nurse. Because of the blood flowing back into the lungs, he had too much fluid in his lungs and had to take Lasix, a diuretic, for 6 months.<br /> Prognosis?<br /> Prognosis is great. Basically them growing on track is an indication that they are doing well. DS2 will most likely always have a hole, but it is decreased in size. It hasn't closed up on it's own, but his body has grown around the hole, so therefore the hole is smaller in comparison to his body size. I hope that makes sense. We still see the doctor on a yearly basis. His murmur is now very high pitched, also an indication that the hole is smaller (but we know that from the yearly echos). In the first two years we had to be more aware of when he became sick and had a fever. But in general he is now a healthy little boy and has no limitations on anything that he can do.<br /> Final outcome?<br /> At this point it's looking great.</p> <p>It's a very stressful and worrisome time I know but being monitored by the pedi cardiologist is the best thing for him.<br /> My one bit of advice would be that you are with your child the most. If something seems off to you don't be afraid to say something. Go with your gut, always. I wasn't too concerned after the hospital tech and cardiologist gave us a sweeping ok and no real indication that it was more serious than it was. But looking back the not eating/latching and the breathing were signs that things weren't all right. I just didn't know that it was related to his heart.<br /> Also - try not to Google. I didn't thankfully until probably last year and I'm glad that I didn't. I would have freaked myself out much more. Hopefully you trust your pedi cardiologist and all will be good.<br /> Let me know if you have any other questions or just want to talk about it. Hope Wednesday's appointment goes well. </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2709069 Sun, 12 Mar 2017 13:05:35 +0000 Ajsmommy 2709069@https://boards.hellobee.com/ <p>Thank you everyone!! These are all very reassuring. Luckily we are close to dc so we have one of the countries best cardiac units that will be treating him. Just happened that way. We have an appt weds so I'm very anxious......</p> <p>I'm trying to compile a list of questions to ask. </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2709040 Sun, 12 Mar 2017 11:28:00 +0000 agold 2709040@https://boards.hellobee.com/ <p>Sorry you are dealing with this. My sister was born with a vsd hole. She had minor limitations (no contact sports and things like that) was always very thin, and took medicine but otherwise was really totally normal. She didn't need surgery. She is still checked annually. She's still active - she's a runner and she had a great pregnancy even though she wasn't allowed to labor. The hole never closed and she has some scar tissue around a valve, I think. She always said how nice it is to have a cardiologist that specializes in pediatric congenital heart conditions as opposed to a doctor that primarily deals with older person heart conditions. I hope you find a great doctor for your baby. Your baby should be just fine! </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2708928 Sat, 11 Mar 2017 19:00:05 +0000 jhd 2708928@https://boards.hellobee.com/ <p>I can't remember if LO had a vsd or asd. I should know! Anyway he had three areas of concern with his heart and had check ups with the cardiologist every few months for the first two years. By 2yo he had outgrown everything and I don't think the ped heard a murmur at his last well visit. We go back to the cardiologist at 5yo just to double check but otherwise he is cleared. </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2708886 Sat, 11 Mar 2017 16:21:12 +0000 azjax 2708886@https://boards.hellobee.com/ <p>I had one of these at birth! It was diagnosed before my parents took me home from the hospital and resolved before I reached a year in age. Haven't had any other heart-related issues since! </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2708885 Sat, 11 Mar 2017 16:19:44 +0000 SweetiePie 2708885@https://boards.hellobee.com/ <p>I have 2 instances to share.<br /> First, my mom. She was born in 1958 and had one. When she was 8 years old she finally had open heart surgery to close it. I was told that they would have done it sooner but open heart surgery was a very new thing let alone on an infant/child. She's fine now as an adult, just some extra monitoring here and there but no major scares or episodes.<br /> Oh and as a child she was pretty "normal", just got a bit more out of breath than her siblings and maybe had to take it a LITTLE easier. But she wasn't sickly or anything. </p> <p>And second, my husbands employee's baby was born with one just about a year ago. They actually did surgery pretty quickly - within first 3 months of life for sure. He is now a healthy one year old and absolutely thriving. No restrictions, just some extra checkups. I assume that his was maybe more significant and that's why they couldn't wait long for the surgery. They were also aware of it before birth. </p> <p>I guess it may not be super informative but wanted to share two cases that worked out with very happy endings! And the fact that I know of two cases makes me think it's not super uncommon? Which would also make me feel better about my doctors decisions. </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2708881 Sat, 11 Mar 2017 16:16:07 +0000 Corduroy 2708881@https://boards.hellobee.com/ <p>I had one. I don't know the details of when it was found but I recall having tests in 1st grade when I still had it. I had some trouble fainting when I went through puberty (later attributed to hormones). I saw a cardiologist at that time that was a little baffled we didn't follow up on the VSD after 1st grade. I had a series of tests done at that time and they could no longer locate it. The VSD never impacted my activity level or life outside of those couple days I had testing. </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2708859 Sat, 11 Mar 2017 15:00:22 +0000 MsMini 2708859@https://boards.hellobee.com/ <p>My DD was found to have a 4-5mm VSD at birth. She presented post C-section birth with respiratory distress with high 02 requirements and a loud murmur. We had a echo done at the hospital prior to discharge on day 3 of life, and followed with a full cardiology workup at 3 months of age where the VSD had decreased to 1-2mm. By auscultation the murmur is gone so we are presuming the VSD has closed but we will do another full work up at age 5. </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2708857 Sat, 11 Mar 2017 14:54:30 +0000 rattles 2708857@https://boards.hellobee.com/ <p>My DD2 has a VSD. Like you, we didn't know until after birth. It was scary at the time, but she's a healthy 2 year old now.<br /> How was it diagnosed? They diagnosed her with a heart murmur while we were still in my recovery room.<br /> What had had to be done? Monitoring via ultrasounds and a series of echocardiograms<br /> Were there other issues attributed to the vsd? No; she did have closer care as an infant for other things in case they were symptoms of cardiac issues, e.g. when she was sick at 3 months, fussy and had a high fever, we were sent straight to the ER for testing<br /> Prognosis?/Final outcome?: Her VSD was almost entirely closed by 6 months. We will be going for a follow up echocardiogram around her 3rd birthday to confirm. </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2708850 Sat, 11 Mar 2017 14:32:05 +0000 LBee 2708850@https://boards.hellobee.com/ <p>Not exactly what you are asking, but my dad had one that was not caught until complications caused by it in adulthood occurred. The doctors were baffled no one had noticed it prior. He ultimately needed mesh put in his heart to close it. At the time the doctor said it was rare for it to not close on it's own during early childhood. I guess I would say the prognosis was great as once they closed the hole it stopped causing the complications he was having.</p> <p>The surgery was supposed to be no big deal. If I remember correctly the only real key part is he had to lay flat for 12 hours after - can't remember why. However, being the medical marvel he had already show himself to be, he threw a clot (aneurism) in the artery they went through and had to be hospitalized / have that addressed. </p> https://boards.hellobee.com/topic/experience-and-or-knowledge-of-vsd-hole-in-heart#post-2708848 Sat, 11 Mar 2017 14:27:02 +0000 Ajsmommy 2708848@https://boards.hellobee.com/ <p>Ds has been diagnosed with a VSD. The Dr's said protocol is to monitor it and that it might close on its own or might require surgery.</p> <p>The vsd was not caught on any of my ultrasounds and was a surprise to us. I'm looking for anyone who's dealt with this condition before or anyone with knowledge about it.</p> <p>How was it diagnosed?<br /> What had had to be done?<br /> Were there other issues attributed to the vsd?<br /> Prognosis?<br /> Final outcome? </p>