ASD and VSD
MOST HELPFUL POSTS
Nancy - posted on 02/04/2013
hi, my baby girl is 25yrs old now. and she is doing good. she was born with chd ASD and VSD. she had bollon when first born. part 1 fonton,@6months and pt2 of fonton in and window shunt in 1988. thanks to God first and then docs and nurses that took great care of her. ( The children Hospital Of Philadelphia)
Connie Pheabus Dellospedale - posted on 12/12/2012
My miracle baby turned 15 yesterday @ our last visit (with his new cardiologist from Johns Hopkins now because his other cardiologist from Univ of MD is gone : ( )my son was found to have minimal pulmonary stenosis, mild pulmonary leakage and trivial aortic valve leakage. Has any other children has these same issues after having ASD and VSD repair?? I was a little concerned but the cardiologist didnt seem to be. He did play football this year with his cardiologist's blessing although my heart stopped a few times :) I am so happy to see him being able to do what he loves.
Beth - posted on 02/21/2009
(Note: I'm sure a lot of the info below is old news to the folks here, but this is an email that I sent out to our friends/family, and posted as a note on my profile, this evening. It was easier to just slap it all in here than to edit, sorry.
Ellie's been scheduled for surgery to correct her heart defects on Monday March 16, at Penn State Hershey Medical Center in Hershey, PA, which is about an hour away from our home.
We will meet with the surgeon on Thursday March 12 to learn more, and Ellie will have all her pre-op testing done at that time.
We'll get a lot more detailed information then, but here's what we know now:
The surgery will involve opening her chest, and then her heart, to repair both the atrial and ventricular septal defects. She will be on a heart-lung bypass machine to oxygenate and circulate her blood while her heart is stopped for the repair.
It's my understanding that the defects will be repaired by inserting patches of a mesh-like material (Dacron?) that will serve as a substrate for her own tissue to fill in the holes.
I think it will take about 4 -5 hours, start-to-finish (from kissing her goodbye until we can be with her again) with about an hour of that being the actual surgery itself.
After surgery, she'll spend a couple of days in the Pediatric ICU, and then move to the regular Pediatric Ward.
We expect that she'll be in the hospital for about four days, so hope that we'll be able to come home on Thursday March 19.
She'll have a follow-up appointment with the surgeon a week after she's discharged, and then will see her cardiologist two weeks after that.
We don't know yet how long to expect it to take for the holes to fully close and the pressure on her lungs to decrease enough to stop the medication.
We're told that a VSD is the most common congenital heart defect and, therefore, this surgery is quite routine.
(Maybe for the surgeon, but not for us and not for Ellie!)
We're also told that, while it sounds awful, the risk level is actually quite low - comparable to an adult having their gall bladder out.
Of course, even if we had a 100% guarantee of no complications or bumps in the road (and, given Ellie's history, we've almost come to expect "bumps" and scares along the way) we still hate the thought of her going through this.
But, given that the holes are not closing on their own, she needs the surgery to protect her lungs from possible damage, and at least it will resolve everything now, so that we can get on with the business of just learning to be a family, and she won't face surgery later, when she's old enough to anticipate or remember it.
For those of you who've been through this surgery, or similar ones, what can we expect in terms of the kind of support that will be most helpful to us, and when we're most likely to need it.
We don't have many friends/family who are local to the hospital, so we don't expect a lot of visitors then, except for my partner's family.
More people will be available to help out when we get home, but I don't know how much help to expect we'll need.
What kind of condition should we expect Ellie to be in when she's discharged?
How will the intensity of her care compare to, say, when we brought her home as a newborn?
(At least, this time, I won't be recovering from giving birth!)
Or how will it compare to right now, when she's a pretty normally-behaved (I guess?) almost-four-month-old (maybe more like a 3-month-old, her gestational age) other than giving her meds 4x daily.
Hell, even now, I'd appreciate if people wanted to bring us food and things like that, so we certainly won't turn down that sort of help, but I just don't know whether to expect to need help caring for her, or if it will pretty much be what we're used to, except she's grumpier because she doesn't feel well.
Any input or perspective on that would be greatly appreciated.
Also, any info about Hershey Medical Center in PA would be very helpful.
Beth - posted on 02/19/2009
The surgical team was scheduled to review Ellie's chart yesterday (Thurs) and we were told we'd "hear something by the end of the week" as to whether they are recommending surgery. so if her cardiologist hasn't called us by mid-day today (Fri) I'm calling him.
Jennifer - posted on 02/16/2009
My son had surgery at 5 months for VSD. It was absolutely the hardest thing I have ever been thru in my life. I noticed some of the other posts asking about after the surgery. My son was so exhausted before the surgery that we barely saw him with his eyes open. He couldn't even eat a whole botte without falling asleep. He went home 4 days after having the surgery and was already eating more ounces and almost not sleeping at all during the day. It was so different. He has had absolutely no problems since and was off all meds by 2 months after the surgery. It was so UNBELIEVABLE. We were so scared of him having the surgery and being so small but he did so well we could not believe it.
Beth - posted on 02/12/2009
Ellie had another echo today, and it did not go as well as we had hoped.
The ASD is smaller than it's been, and VSD is a bit smaller than last time, but is not changing as quickly as the cardiologist would like to see.
The pressure gradient between her lungs and left ventricle has also increased (which we want) but also not as much as he'd like to see.
So, he will be sending her chart to a surgeon to review. We should hear back from him in a week or two.
It's possible that he will want to watch it a bit longer and see if it improves enough on its own, but it sounds quite likely that she will be having surgery to correct both defects, as soon as about a month from now.
This would be happening at Hershey Medical Center in PA. Anyone with experience there?
Jamie - posted on 02/07/2009
My son was diagnosed at 2 days old with a moderate VSD. It was heart breaking. He had an echo that same day. He was hungry at the time and I had to use my finger to soothe him. I cried! We have to go back to the doctor in a year and see how his heart is growing...then discuss further treatment. Surgery is still a possibility. It is heart breaking (literally)!
Connie Pheabus Dellospedale - posted on 02/05/2009
My son was born with ASD and VSD as well diagnosed when he was 2 days old.
He had double hernia operation at 2 months and 2 weeks later developed trouble breathing,was hospitalized and went into cardiac arrest the night before being released from our local hospital. He was transported to Univ. of MD where he was then placed on a ventilator and diagnosed with RSV (which at the time I had never heard of) he spent over a month on machines breathing for him. 7 months of age he had to undergo cardiac cath to try and close the 1 hole which did not work and 2 months later he had open heart surgery which was to last 3-4 hrs and turned out to last 14 hours because of complications. My son once again was placed on machines for about a month and placed in a drug induced coma, we lived one day at a time. He came off the machines and was addicted to morphine and had to undergo methadone treatment.
I am happy to say that my little guy is now 11 years old and an honor roll student. He does have pains in his chest every once in a while and the doctors don't seem to be to concerned. He had great doctors and nurses at Univ of MD who took VERY good care of him and without them I know that my son would NOT be here. Thank You Dr.C and Dr. Love
Carrie - posted on 01/25/2009
My daughter had surgery at age 5 months for AVSD to patch the hole and repair the valves, 6 months to repair the mitral valve, 6 1/2 months to re-repair the mital valve, then at age 3 years she had her mitral valve replaced with an artificial valve, clotted the valve due to a clotting disorder called Factor V Lieden, and had the the artificial valve replaced with a pig valve that leaked as bad as her own valve did, and finally had another artificial valve put in at age 3 1/2 years old. She is now 10 years old and doing well but is showing early signs of outgrowing the valve. We don't know when she will have to have it replaced again, but we are holding out for a long time.
Beth - posted on 01/23/2009
Great news today!
Ellie's echo showed that her VSD has gotten a little bit smaller.
It started out at, I think, 4.4 mm x 6 mm and now it's more like 4.4 mm x 5 mm.
Dr. C says that "We're not out of the woods yet," about the possibility of surgery, but as long as it's getting smaller, he'll "drag his feet" about bringing a surgeon into the picture.
We go back in 3 weeks for another echo.
(Btw, if she does need surgery, they'll fix the ASD at the same time. Or, even if the VSD fixes itself, there could be ASD surgery down the road. But the doc is really not concerned at all with it right now.)
She behaved very well for the echo. (I nursed her right before we started, which helped, I think.)
I started to say earlier that our doc also has Baby Einstein videos, but she doesn't care yet - But she totally watched it the whole time!
We were at a different office for the last echo and they didn't have the video there, if I remember correctly (our usual office is just peds, sometimes we see him at a non-just-peds office), so this is the first echo with video available since she was just a couple of weeks old.
At that point, she was oblivous to it, today, she stared at it the whole time.
Not that I see "stares at tv" as a milestone to be thrilled about, but it certainly does show how much more aware she is of her surroundings now.
Sarah - posted on 01/22/2009
When Brendon has an echo we bring his favorite toy with us. I also have a portable dvd player (we bought before his heart surgery), it is a life saver. The last echo he had done, they had a TV & VCR with baby einstein video, he sat and watched most of it. he was 1 and 1/2 yrs. old. If we don't have these things, I try to distract him by singing to him, he lves music. I hope this helps!
Beth - posted on 01/22/2009
Ellie wiggles a bit during the echos, but we just hold on to her, give her something to suck on and comfort her.
(I'm trying to figure out if they could possibly get to her chest if I were to hop up on the table myself, hold and nurse her - that would probably help a lot!)
She's only a few weeks old, though, I can imagine a toddler would be much more of a challenge!
Noran - posted on 01/22/2009
my daughter is 1.5 years old and she has ASD and PS we've had 2 echos but i'm afraid to do the third ,as they give her a very bad medicine (chilli)to let her sleep but she always doesn't sleep for the echo how do u perform the echo?
Sarah - posted on 01/20/2009
On July 20, 2006 my son was born with Tetrology of Fallot with VSD, and Pumonary stenosis. He he 100% blockage on the pulmonary valve, so at a day and a half old he had a 3 millimeter & a 6 millimeter ballooning done. Then at 4 and 1/2 months he had open heart surgery to repair the hole in his heart and the valve. For the valve they had to cut the anulus(which is the ring) and patch it so now instead of the valve not opening all the way like before the surgery, it doesn't close all the way and leaks (which means it is weakenng as he grows). So somewhere between the ages of ten and teens he will need to go back for repair/ replacment/ or by-pass for the valve. He will not need to have any more surgeries for the hole that we know of. The doctors said that the tissue will graph it self to the piece that they used to patch the hole. He is 2 and 1/2 years now and doing great. People don't even know he has a heart problem until we say somthing or he lifts his shirt as they see his scar.
Lisa - posted on 01/19/2009
hi i was born with several heart defects,VSD, Dextro Cardia,Pulmany Stanosis,a few others i can*t spell i*ve had explority surgery but still have the defects. I*ve gone on to have 6 children, i go and have check-ups 3 times a year, hopefully my story will put your mind at ease a little bit x
Beth - posted on 01/16/2009
My daughter (born 10/27/08 / due 11/25/08) has an ASD and VSD as well, but her doc isn't concerned about the ASD.
(Patent foramen ovale? He didn't use that term, but the description fits. I really need to clarify that, but we're always so focused on the VSD that I forget!)
The VSD was 4 mm when she was about 9 days old, and as of 12/23/08 it had not changed significantly.
She's scheduled for another echo on 1/23/09, and if we don't see any restriction by then, he's going to send her echo to the surgeon to review.
On 12/23 he put her odds of needing surgery at about 50/50 and said that if she does, it will be when she's 4 - 5 months old.
I'd be interested in hearing more about your experience with the surgery.
How old is your daughter now? How is she doing?
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