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HelenZ
So worth the wait :)
Member since 10/07 2862 total posts
Name:
Helen
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anyone have experience with VSD's and double outlet right ventricle heart defects?
We had our Level II this week and followed up with 2 pediatric cardiologists, and as of yesterday the baby's diagnosis is a large VSD (hole in the heart) and double outlet right ventricle- the aorta is favoring the right ventricle instead of the left as it should. Just hoping to hear from anyone whose LO had surgeries to correct this or if you know of anyone who has had this done. We will continue to be monitored with fetal echocardiograms for the rest of my pregnancy, I guess that will give us some indication of whether surgery is needed right after birth or when he or she is a few months old. We met with Dr. Angela Romano at the Children's Heart Center- LIJ/Cohen's Hospital- I absolutely loved her so it's comforting to know we are in good hands at least!
Thanks!
Message edited 6/9/2012 10:41:24 AM.
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Posted 6/9/12 10:39 AM  |
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HelenZ
So worth the wait :)
Member since 10/07 2862 total posts
Name:
Helen
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
bump
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| Posted 6/10/12 1:41 PM |
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lbride
Lovin' my mini man!
Member since 3/07 2475 total posts
Name:
Lisa
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
no experience with it, but my DS is followed by a cardiologist because of a genetic mutation I have. His name is Dr. Luxenberg and was listed in the best Doctors of NY magazine (just came out and in stores). May be worth hearing multiple opinions! Best of luck with everything!
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| Posted 6/10/12 4:00 PM |
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Domino
Always My Miracle
Member since 9/05 9924 total posts
Name:
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
No experience just hugs
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| Posted 6/10/12 4:07 PM |
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HelenZ
So worth the wait :)
Member since 10/07 2862 total posts
Name:
Helen
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
Posted by lbride
no experience with it, but my DS is followed by a cardiologist because of a genetic mutation I have. His name is Dr. Luxenberg and was listed in the best Doctors of NY magazine (just came out and in stores). May be worth hearing multiple opinions! Best of luck with everything!
Thank you! We were at his office already (but met with a different doctor in the practice, Dr. Vallone). I think they are a good practice to use once your child is actually born....however their fetal echocardiogram machine didn't provide the clearest images, so b/c of that I think we're going to stick with the practice where we received our 2nd opinion since they were able to give us an accurate diagnosis- LIJ/Cohen's The Childrens Heart Center. Thank you for your input!!
Message edited 6/10/2012 4:10:58 PM.
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| Posted 6/10/12 4:09 PM |
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whoababy11
it's only forever
Member since 11/10 1598 total posts
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
im sorry i cant help but i wanted to send hugs and prayers too.  
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| Posted 6/10/12 4:26 PM |
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Alexandra17
Keep It Positive
Member since 4/09 6262 total posts
Name:
Alexandra (ali)
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
Helen, I have to experience but I read your post on the other board to DH and we just want to send our prayers to you because you deserve the best care and we hope all goes smoothly for you and your DH.
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| Posted 6/10/12 6:27 PM |
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Anne44
LIF Adolescent
Member since 8/10 752 total posts
Name:
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
My dd was born with a hole in her heart that was not seen until she was born. I believe is was a VSD. She was born at LIJ and immediately saw Dr. K at Cohens Childrens Hospital for an echo. She did not need surgery but needs to be followed and monitored. We were/are extremely happy with the care she received there.
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| Posted 6/10/12 9:37 PM |
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HelenZ
So worth the wait :)
Member since 10/07 2862 total posts
Name:
Helen
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
Posted by Anne44
My dd was born with a hole in her heart that was not seen until she was born. I believe is was a VSD. She was born at LIJ and immediately saw Dr. K at Cohens Childrens Hospital for an echo. She did not need surgery but needs to be followed and monitored. We were/are extremely happy with the care she received there.
Thank you! Yes I was told VSD's don't always require surgery, but unfortunately double outlet right ventricle issues always require surgery so I am trying to mentally prepare myself for that now (even though it's realistically 4+ months away). Very happy to hear your daughter's VSD resolved itself and didn't require surgery though!!
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| Posted 6/11/12 5:52 AM |
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Bridex100
Two Under Two Mommy
Member since 3/08 10420 total posts
Name:
Momx100
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
DS had 2 heart surgeries when he was a newborn. He had coarc repair at 2 weeks and VSD at 2.5 months.
We did not know of his heart defects until his 2 week appointment and he had emergency surgery the day after his 2 week appointment.
His VSD was too big so they had to patch it. He was put on bypass. They waited for him to grow but his heart was preventing him to gain weight so they decided to have the surgery at 2.5 months vs the original 4 months they were planning.
It was a difficult time for us but now at age 3, he is a perfectly healthy kid. We are grateful we caught it in time and had amazing doctors.
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| Posted 6/11/12 8:20 AM |
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HelenZ
So worth the wait :)
Member since 10/07 2862 total posts
Name:
Helen
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
Posted by Bridex100
DS had 2 heart surgeries when he was a newborn. He had coarc repair at 2 weeks and VSD at 2.5 months.
We did not know of his heart defects until his 2 week appointment and he had emergency surgery the day after his 2 week appointment.
His VSD was too big so they had to patch it. He was put on bypass. They waited for him to grow but his heart was preventing him to gain weight so they decided to have the surgery at 2.5 months vs the original 4 months they were planning.
It was a difficult time for us but now at age 3, he is a perfectly healthy kid. We are grateful we caught it in time and had amazing doctors.
Thank you so much for sharing! What hospital performed your son's surgery? I was also told the VSD is large (as of now), hoping it gets smaller although the pediatric cardiologist seems to think that is unlikely (and actually in our case, I was reading the hole actually enables the baby to breath b/c it flows the oxygenated blood through since the aorta would not function properly with the outflow going to the right, so we actually NEED the VSD to exist technically). Basically when they put the patch over the hole it will also redirect the aorta's flow at the same time, at least that seems to be what they were saying we'll know more once we meet with the heart surgeons after my 24 week appointment. I was told they'd prefer to have the surgery at 3-4 months but won't know for sure until he or she is born. I am nervous if the surgery is put off though that I will be analyzing every breath the baby takes, if it seems labored etc., also concerned about the eating issues and not gaining weight.
How often do you have to go back to the cardiologist for your son's check ups? And is he allowed to play sports?
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| Posted 6/11/12 9:33 AM |
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janedoe
3 GIRLS!!!!
Member since 8/09 3184 total posts
Name:
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
Sorry, no experience. Just
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| Posted 6/11/12 10:28 AM |
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Bridex100
Two Under Two Mommy
Member since 3/08 10420 total posts
Name:
Momx100
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
Posted by HelenZ
Posted by Bridex100
DS had 2 heart surgeries when he was a newborn. He had coarc repair at 2 weeks and VSD at 2.5 months.
We did not know of his heart defects until his 2 week appointment and he had emergency surgery the day after his 2 week appointment.
His VSD was too big so they had to patch it. He was put on bypass. They waited for him to grow but his heart was preventing him to gain weight so they decided to have the surgery at 2.5 months vs the original 4 months they were planning.
It was a difficult time for us but now at age 3, he is a perfectly healthy kid. We are grateful we caught it in time and had amazing doctors.
Thank you so much for sharing! What hospital performed your son's surgery? I was also told the VSD is large (as of now), hoping it gets smaller although the pediatric cardiologist seems to think that is unlikely (and actually in our case, I was reading the hole actually enables the baby to breath b/c it flows the oxygenated blood through since the aorta would not function properly with the outflow going to the right, so we actually NEED the VSD to exist technically). Basically when they put the patch over the hole it will also redirect the aorta's flow at the same time, at least that seems to be what they were saying we'll know more once we meet with the heart surgeons after my 24 week appointment. I was told they'd prefer to have the surgery at 3-4 months but won't know for sure until he or she is born. I am nervous if the surgery is put off though that I will be analyzing every breath the baby takes, if it seems labored etc., also concerned about the eating issues and not gaining weight.
How often do you have to go back to the cardiologist for your son's check ups? And is he allowed to play sports?
We have annual appointments.
DS is totally allowed to play sports. He started tot soccer this spring. He loves hitting the beach volleyball. We also play wiffle ball.
Seeing his scar is still heartbreaking but you get used to it.
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| Posted 6/11/12 10:50 AM |
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MrsA714
Baby #2 is here!
Member since 8/07 8806 total posts
Name:
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
Many and .
My DD was a preemie and we were advised by the NICU that she had both a VSD and ASD but they were minor. We followed up with a pediatric cardiologist at 3 months (as per the NICU) and by then both holes had closed up so there was no need for additional follow up at that point (she is now 2 1/2).
Good luck!
Message edited 6/11/2012 11:16:08 AM.
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| Posted 6/11/12 11:13 AM |
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kahlua716
3 Girls for Me!
Member since 8/07 12475 total posts
Name:
Keri
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Re: anyone have experience with VSD's and double outlet right ventricle heart defects?
No experience- but wanted to give some hugs and prayers
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| Posted 6/11/12 12:04 PM |
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