DS needs heart surgery

[Melarina]

Yesterday we went for what we thought was a standard DS two month checkup. I had noticed for a long time that he pulled in sharply when breathing, to the extent that his head moves when he breathes, but the ped had said previously that some babies just do that and he didn't hear anything breathing-wise of concern. Yesterday, however, he heard a heart murmur. Still wasn't very concerned but sent us for a chest xray and an echocardiogram just in case. Thank goodness he did. We found out from the pediatric cardiologist that DS has a fairly large ventricular septal defect (VSD) as well as PDA. Will need heart surgery, probably between 4 to 6 months of age, at the medical university about two hours or so from our city.

Now we are wondering how much of DS sleeping/eating/pain issues are related to the fact that he has this hole in his heart which causes bloodflow to make his lungs stiffer than normal and more difficult to breathe, etc.

The good news is that most children with this defect, according to the cardiologist, are able to recover well and the surgery is done fairly regularly at this hospital. Of course we are consumed with worry and fear about our little guy. Unless he does poorly, it will be at least two months until he has the surgery. We feel very good about all the medical folks involved so far.

Has anyone else experienced something like this? What should we anticipate/what can we do to prepare?

Thank you so much for your encouragement. I have really drawn a lot of strength and support from the wonderful people on this board.

[MaiseyDog]

No experience with this, but just wanted to send big hugs to you.

[Ceepa]

We know a couple whose daughter had the same surgery around the same age. Everything went really well and she hasn't had complications of any kind since.

P&PT to your little man. I'm glad they caught it when they did.

[SnuggleBuggles]

coming your way. I hope everything goes smoothly.

Beth

[Snow mom]

Sending your little man lots of PT. I'm glad they caught the defect. Keep us posted.

[veronica]

Sending you hugs and p&pt during this difficult time.

[mommylamb]

My nephew was born with a hole in his heart and had to have surgery as an infant. He's fine now. The doctors say he will never play professional sports, but other than that, not to worry. He also had to have a valve replaced, and will probably have to go again for surgery to have the valve replaced as he grows, so that's the unfortunate thing. He goes annually to a cardiologist for a check up.

I'm sorry you have to go through this.

[elliput]

We are all here for you and your sweet little DS.

[Carrots]

No experience, but lots of PT coming your way.

[pb&j]

Hugs to you and DS. You might want to check tchin.org for info and survivor stories.