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Discussion Starter · #1 ·
My daughter (now 6 weeks old) was diagnosed as having one of these at 3 days old. She had a thorough ECG so they're pretty much certain that is her only heart defect. She's otherwise completely healthy and typical. She's eating and growing well--I know those are the main concerns, especially at this age. The cardiologist in the hospital said the hole was muscular and small-medium, I know the prognosis for that closing on its own is pretty excellent. She's not on any meds.

Frankly I think the only reason she ever spent time in the NICU is because we had a homebirth and when the midwife decided we needed her loud heart murmur evaulated asap it was a Saturday so we had to go through the ER, where of course they like to err on the side of caution and admit, especially with newborns.

But at any rate we have to follow up with a pediatric cardiologist. The appt is this week and I am very scared. She has to have another chest x-ray and then see him. Anyone who has dealt with something like this, what can I expect? The ER/NICU experience was fairly traumatic for our family (and I know a lot of people have been through a lot worse so I don't mean to be a drama queen but it's a long story) and we're all kind of on edge about all this. What can we expect to have happen at this follow up? Anyone else have a child living with this condition? What have you learned?
 

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I saw a pediatric cardiologist about my son when he was in the womb, plus he had a series of chest x rays after birth, as well as echocardiograms. Either procedure is very straightforward and quick with a tiny baby. And in my experience the doc looks at the echo and talks with you about what s/he sees, s/he's not going to do anything much with your baby. Not that bad as appointments go, but maybe someone can talk with you who has done the VSD appointment in particular. Are you worried about what they might see, or about the appointment itself?

Is any part of the trauma about the care you got at the hospital? If so, there might be reason to shop around, if you have a choice about where to go.

Hope that's some help. Fiona
 

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My son has a VSD. He also had a more serious defect which was surgically repaired. He is also on blood pressure meds, to lower the pressure in his body to encourage blood to flow out to the body instead of shunting across the VSD. He was put on that med b/c he wasn't eating or growing, so probably wouldn't apply to your baby.

As for what to expect at the followup. Sometimes ds gets an echocardiogram (u/s of the heart) prior to seeing the cardiologist. This is partially to check on his repair, and partially to see what the VSD is doing. He usually has his blood pressure checked, on all 4 extremities, but I think that's more related to the other defect. The dr listens to his heart and lungs. She asks how he's doing, what his breathing is like at home. That's about it, I think.

We've never gotten any flak for the homebirth, in case you're worried about that, but of course some drs may bring that up. Oh, and they may want you to do Synagis during the RSV season. It's recommended for babies with heart defect, and preemies, and other fragile babies. We did it, but I didn't know how to research, and wasn't on MDC then, and they were pushing pretty hard. But my ds was still pretty fragile when he came out of the hospital.
 

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Discussion Starter · #4 ·
The doctors we worked with in the hospital were all great, including the one we're going back to see this week, so that's not my concern. No one would talk to us for the first couple hours in the hospital though and that's where a lot of the trauma came from, just overhearing snippets of medical jargon as they raced around madly. She wasn't in crisis or unstable when we brought her in, the mw just wanted an expert to listen to her murmur. But they had her on O2, IV fluids, three or four monitors, etc, anyways. We thought, in the shock of the moment, that she was dying.
No one was able to explain to us that this was "just standard procedure" until HOURS later.

And then just the feeling that we no longer had the ability to give informed consent, that everything was out of our control and moving too fast to understand much less give informed consent. I hemorrhaged at birth and still had to be helped to the bathroom at three days pp, I wasn't even strong enough to stand next to her and comfort her while they poked her, I was almost passing out just having to sit up for that long. I felt so helpless and like there was nothing I could do for her, though to my credit I did fight with the NICU nurses to stay overnight and breastfeed her instead of having her on bottles.

All night we thought she might need surgery and meds right away, but when the senior cardiologist came in the next morning he listened and said she was fine and sent us home. It felt like a miracle.

I understand her condition better now, I guess I'm just terrified of things spiralling out of control like that again, or that they might change their minds and decide she has a really bad problem after all.
Realistically though I know that the main complication of this defect is congestive heart failure, and that if she had that she would be showing symptoms like difficulty feeding, which she isn't.

Sorry to ramble like this! Do you know what it is they look for on the x-rays? I don't understand why they're doing that and not another echo (I specifically asked about the ecg and they said no, they're not doing another one.)
 

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Discussion Starter · #5 ·
Quote:

Originally Posted by mama-a-llama
We've never gotten any flak for the homebirth, in case you're worried about that, but of course some drs may bring that up. Oh, and they may want you to do Synagis during the RSV season. It's recommended for babies with heart defect, and preemies, and other fragile babies. We did it, but I didn't know how to research, and wasn't on MDC then, and they were pushing pretty hard. But my ds was still pretty fragile when he came out of the hospital.
Crossposted with you, thanks for the reply! What is synagis?
 

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Quote:

Originally Posted by BelgianSheepDog
Crossposted with you, thanks for the reply! What is synagis?
Oh sorry. It's a shot, though not technically a vaccine. It can't actually prevent RSV (respiratory synctial (sp?) virus) but is supposed to lessen the possibility of nasty complications like pneumonia. It's outrageously expensive, like $1500 per shot, most of which was covered by ins. We just got a bill from our ins for $100 per shot (he got four over the winter). You can ask about it in the vax forum, and they will probably tell you not to do it. I'm not sure what I would do if I had to do it over. We originally signed off to refuse, but when the cardiologist came around and tried to push it, I had actually already had second thoughts. At that time, after the trauma we'd been through, the thought of him having to be hospitalized again with RSV was unbearable. And it's one of those things that adults just seem like they have a cold, so it can be passed easily (or at least that's my understanding.)

And about the x-ray, I think they may be able to detect heart failure with it, by seeing if there's swelling/excess fluid. Ds had one in the ER before getting sent to CHOP, and his heart was huge, b/c he was in severe heart failure. But I don't know why they wouldn't do another echo.
 

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My first DD was born with three small VSDs. They were actually diagnosed prentally (long story, blah, blah...). Her follow-up at 2 weeks postpartum with the ped cardiologist was in his office, so it was not at the hospital. Maybe you can find someone who will do the follow-up in an office? And I have to say that the ped cardio we saw has to be one of the nicest medical doctors I have ever met.

FYI, my DD's VSDs all spontaneously closed by the time she was 6 months.
 

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I'm sorry you had such a rough time when your dd was in the NICU


It wasn't like that for us because we knew my son would be in, though that's not to say it wasn't horrible because it was ... I had never thought really about what it would be like to be there unprepared especially if they didn't even have time to tell you it was just routine!

My guess is that a follow up is just that, a follow up, just to be absolutely sure that everything is OK (and they are probably already pretty sure). But I would definitely ask why they aren't doing the EKG so you don't worry.

I hope all goes smoothly -- come back to tell us! Fiona
 

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My brother was born with a significant VSD. He was pretty fragile physically for the first few years of his life, but after he turned four the hole shrunk to the point where it doesn't really affect his physical health. He never had to have surgery. He turns 20 in a couple of weeks and is healthy as a horse.

Those first few years were so scary for my parents. Nobody would tell them what was going on with my brother, and my mother had a traumatic birth with him as well. He was hospitalized several times for bronchitis, pneumonia, RSV, etc. The Synagis might be a good idea if your daughter is prone to respiratory problems.

Hugs to you. I remember how hard this was for my parents in the beginning. However, let me reiterate: you would never know the difference now. He is a healthy adult with no residual issues.
 

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Quote:

Originally Posted by BelgianSheepDog
No one would talk to us for the first couple hours in the hospital though and that's where a lot of the trauma came from, just overhearing snippets of medical jargon as they raced around madly. She wasn't in crisis or unstable when we brought her in, the mw just wanted an expert to listen to her murmur. But they had her on O2, IV fluids, three or four monitors, etc, anyways. We thought, in the shock of the moment, that she was dying.
No one was able to explain to us that this was "just standard procedure" until HOURS later.
Ugh, that's so awful! I remember that feeling well, standing outside the door of the ER room and no one would talk to me. Ugh, I remember hearing over the PA system, "VERY sick little boy in room 20" and looking up and seeing we were in room 20. But ds was in crisis and unstable, so they were really too busy helping him to talk to us. I just can't see how they had an excuse not to talk to you and explain that they were just following protocols.

Oh, and like another poster said, his ped card is one of the nicest drs I've ever seen. I'm sad she's not home with her kids, but SO glad that she's "mother" to all the little babies in the cardiac ICU, of which she's the director.
 

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Discussion Starter · #11 ·
We just got back...the cardiologist says IT'S CLOSED and we never have to see him again!!!!! He even called in one of his colleagues for a second opinion and she agreed, the VSD is gone, it's not an issue anymore.

THANK YOU all so much for talking to me about this problem. I'm so glad that we won't have to worry about this anymore and I wish the very best for all of your families.
 

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belgian, i am so, so, sooooooooooo relieved that it closed spontaneously on its own so quickly and that your consults with the cardiologists are done.



~claudia
 
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