Please help...

[Suzy Mouse]

My friend (6 months pregnant) just had a sonogram and found that her baby has Ventricular Septal Defect. There is a very large hole in the baby's heart and she will need surgery to repair it...possibly at around 6 months.

Does anyone know of any doctors that specialize in this area? Does anyone know someone that has gone through this? Any information that I can give to her would be wonderful.
Thanks.

 

[Dan Murphy]

My very best wishes, Suzy, for your friend's little baby. Only thing I can do for you is a pediatric cardiologist search for New Jersey.

http://www.google.com/search?hl=en&...t=googlet&q=pediatric+cardiologist+new+jersey

My prayers are with her.

 

[snoopy]

My niece, now 14, had this done when she was a baby. Not sure who the doctor was, but I do remember she had the surgery done at Children's Hospital here in Washington, D.C.

I should mention that Katie is a very active, athletic kid at 14. She plays soccer and is a cheerleader! Had she had been born with this defect in another era, she might not be alive, much less be the active girl she is today.

13 years ago, when she had this operation done, it was sort of touch and go and she had to be watched closely for a good long while afterwards - maybe until she was 5? When they first diagnosed her with the hole in her heart - they took the wait and see approach to see how she would do. Some babies can do fine and have no symptoms if the hole is small enough. She was not one of those babies, she did not feed well and got very tired out. So they did the surgery when she was close to 1 year old. In any case, she has no restrictions on her life now, the surgery was a total success.

Good luck to your friend and her baby, Suzy!

 

[Mishetta]

I'm so sorry to hear this. Prayers & PD on it's way!

 

[tar heel]

My 8-year-old had this but the hole was small and closed by itself sometime between when he was 1 and 2. It was the most wonderful day when the cardiologist said the echocardiogram showed the hole was gone! We already knew there was a good chance b/c at the appointment the year before, he could no longer hear a murmur but the echo showed the hole was still there.

 

[jel0511]

SuzyMouse, you leive cloe to where I live. I suggest having your friend either talk to her pediatrician right away, or if this is her first child, contact the pediatrician she was planning on using. I'd also tell her to contact Children's Hospital in Philadelphia. I'd have to be certain that the have Pediatric Cardiologists on staff there, and their physicial referal system would help you there. If your friend is still concerned, PM or e-mail me and I can give you the name of my Pediatrician. My group is the best in Princeton.

 

[crazyme5kids]

There is a book called "The Best Dr.'s In The NY Area", or something like that (I can't find my copy right now). They might have one for NJ too. It list the areas best Dr's, and what they specialize in. The dr's that are listed are picked through polling other Dr's, sort of a if it were you or your family member, who would you chose. It is a book I can highly recommend.

 

[Suzy Mouse]

Thanks for your help. Does anyone else have any information that would be useful?

 

[Disney Doll]

Don't discount Yale in New Haven CT. They have an excellent Children's Hospital. They saved the life of a little boy very dear to me with Down's Syndrome numerous times.

 

[6_Time_Momma]

VSD is actually quite common. Many kids have it and never know until it is picked up during a routine physical. Most close on their own without problems. Even those who go through surgery do wonderfully.

My oldest had a VSD, which ended up closing on it's own.

Garrett had VSD and ASD combined. He had open heart surgery when he was 3 months old. You would be surprised how well they do!! He was in the hospital for about 9 days total, but that was 11 years ago, so it might even be less time by now.

My 5 year old had ASD too, incidentally. Hers closed on it's own as well.

Best wishes to your friend and their baby!

 

[Whitegloves]

My soon to be 12 year old son had this same defect. He was diagnosed around 18 months and had open heart surgery just after his 2nd birthday. The hole was the size of a quarter (big when you consider all the bigger his heart was at the time) and was located between the upper two chambers of his heart. We took him to Children's Hospital in Pittsburgh. They were wonderful! He came through the surgery fine and was home a week later. Now he is a very active (almost too active,lol) 11 year old. He requires no additional meds. He got the all clear a few years ago to do whatever he wants...roller coasters, etc. He has since ridden Splash Mt., Rock & Roller Coaster, Thunder Mt. and more.
They do work wonders in the medical field nowadays. It is great when the hole closes on it's own but nice to know it can be repaired when it doesn't.
One other thing... I read somewhere not too long ago...may have been in Prevention Magazine but don't quote me...that they have developed a procedure where a type of patch is placed in the opening and closes shortly thereafter, if I recall correctly the operation is done similar to a catherization and doesn't require open heart. Seems to me they had done quite a few of these with great success.
Hope this helps.
Diane =0)

 

[Tiggeroo]

Unless you are in north Jersey close to NY, I would definitely head to Phila. Most likely she will end up in Childrens Hospital of Philadelphia, although it is possible that Thomas Jefferson has a childrens specialty department, or Univ. of Pa. The problem I have with most south jersey dr's is that they do not get the volume of difficult cases a place like CHOP does. This is where we have gone when my children have needed something special, with out pediatrician's blessing. It may be stressful for this expectant mother but it is a blessing to know in advance. Now she has a bit of time to search for the best physician available. She can even, if necessary make changes to where she gives birth.

 

[Pin Wizard]

I would think she first needs to check who is on her insurance plan, if she plans on staying in network. Then take it from there.

 

[Kelsie]

My DD had her surgery for an ASD last year. This was her 2nd surgery, the first was at 2 months for a PDA closure. She is 8 and is finally growing, gaining weight and active!!

I agree, start with a Pediatric Cardiologist and they will help with the rest. Children's Hospitals are the best!


(((hugs))) and I am here if you need to talk.

 

[dandave]

One of my younger sisters has this. It was discovered when she was around 2. They decided not to perform surgery to close the hole (early 70s). I believe it closed some on its own. Still, her heart does not "bum-bump"- it swooshes. She does have to be careful with her activity level. She is very healthy though, and she has had two beautiful, healthy children.

 

[philaround]

They found the same thing with my DGS when my DD was 5 months pregnant. We were lucky in that we live only a few miles away from The Childrens Hospital at Yale New Haven Hospital in New Haven, Ct. They have one of the best [if not the best] Pediatric Cardiac Surgical Units you can find. Dr. Kopf was my DGS's surgeon and continues to care for him. [There were other heart problems besides the hole between the ventricles] The hole is patched with his own heart tissue and will never be a problem again.
This kid is now 18months old and the picture of health with minimal restrictions on his activities. He just had his 4th procedure last Thursday and is doing great. He was supposed to be in the Hospital 3-4days this time but by Saturday morning he was up and running around so they sent him home.
Since this is the only hospital we have had this kind of contact with I'm probably a little prejudiced, but I know you won't go wrong with them.