Balloon Valvuloplasty
- Thread starter sunflower
- Start date
lisa8439
New Member
I don't have any information personally, but a friend of mine had a baby that was born with heart problems - he's had that procedure done at Children's hospital in DC and it was a success. He had to have surgery as soon as he was born and has had to go back to Childrens a few times for other procedures, but he is a happy, well adjusted 2 year old. I know it was very scary for them each time - but she has had nothing but wonderful things to say about the cardiologist dept. at Childrens.
sunflower
Loving My Life...
That's good to hear.. That's where it will take place.. I know they're the best when it comes to children and infants...
lisa8439
New Member
My friend always had nothing but good things to say about the doctors, staff, etc. - I know the last time he had to have it done, they actually 'over' inflated the balloon (on purpose) to 'tear' the valve a little... it's a controversial thing apparently but he had the procedure done a few times yet the pressure kept going up, so they wanted to try that - I don't think he's had to go back since, so it worked great... it does sound like they are very well informed, keep up on the 'latest' research, and make the best decision based on your child and their condition.
Children's is the only place I would take my kids if something were to happen and they required specialized care... so I think you are in good hands. I'm sure it must be scary though - my friend dealt with it much better than I think I would have, she seemed very confident with the hospital and his doctors.
belvak
Happy Camper
Nothing to add, just wanted to offer a
and let you know you and your son will be in my thoughts.
lisa8439
New Member
I will talk to my friend this weekend and see if there is an online forum that you could check out... I'm pretty sure she was online a LOT and had a few places that she went to... he had to have surgery almost immediately after birth, so she's been dealing with it for a while. I'll PM you when I talk to her and let you know what online sites/forums helped her out. Hopefully I'll talk with her today, if not tomorrow...
The groin didn't work for her baby - they did have to cut him open, but it isn't *as bad* as it sounds... his scar isn't that bad... and it is healing well, kids heal up really quickly. He actually had to have several procedures, and I'm pretty sure they had to go in through the chest for all of them. And he may have to have some in the future - he'll be 2 soon and he's running around, into everything, and trying to talk as hard as he can...
He was a preemie (born around 32 weeks) due in part to the health problems, so he is developmentally 'behind' for his birth age - but for his adjusted age, he is right on track, even with the heart problems. You said you are going to Childrens - he'll be in good hands, and in my prayers
morningbell
hmmmmmm
Prayers for the baby boy
morningbell
hmmmmmm
I JUST looked it up. My son was diagnosed with an SVT while in utero, it apparently runs in my family. They monitored him for a while until age 8, he out grew it. The Balloon Valvuloplasty was something they were considering for my son if the SVT didn't correct itself.
sunflower
Loving My Life...
This was the route we were going to take but after the Dr. saw him again last week his peak gradient went up from 25/30 to 65 .. He will have one more exam on the 30th at the office then we go to Children's for a more thoroughly (sp) exam.. After that we schedule his surgery with a month.. He is a very healthy baby who is gaining weight and shows no signs of "being sick" but that can change at any time..
sunflower
Loving My Life...
I will talk to my friend this weekend and see if there is an online forum that you could check out... I'm pretty sure she was online a LOT and had a few places that she went to... he had to have surgery almost immediately after birth, so she's been dealing with it for a while. I'll PM you when I talk to her and let you know what online sites/forums helped her out. Hopefully I'll talk with her today, if not tomorrow...
The groin didn't work for her baby - they did have to cut him open, but it isn't *as bad* as it sounds... his scar isn't that bad... and it is healing well, kids heal up really quickly. He actually had to have several procedures, and I'm pretty sure they had to go in through the chest for all of them. And he may have to have some in the future - he'll be 2 soon and he's running around, into everything, and trying to talk as hard as he can...
You said you are going to Childrens - he'll be in good hands, and in my prayers
I appreciate it!
bcp
In My Opinion
I was far from a baby, but I had it done.
they went through the groin, I was mostly away during most of the procedure, and I was watching the screen as they did it. totally fascinating.
end of story, they did it on a Tuesday morning, Wednesday morning I walked out and haven't looked back since.
no pain, no problem, no recovery time.
I'm sure they have this down to a science with the smaller ones, I would try not to worry. ( I know, easy to say)
Add to that the fact that it is at childrens and you are certainly in the best hands that are possible.
they went through the groin, I was mostly away during most of the procedure, and I was watching the screen as they did it. totally fascinating.
end of story, they did it on a Tuesday morning, Wednesday morning I walked out and haven't looked back since.
no pain, no problem, no recovery time.
I'm sure they have this down to a science with the smaller ones, I would try not to worry. ( I know, easy to say)
Add to that the fact that it is at childrens and you are certainly in the best hands that are possible.