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Just found out: 2yo ds needs heart surgery!
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amother




 

Post Tue, Jan 15 2013, 9:44 pm
yes, ds has HLHS.

yeah OP, whew, what a day! and im yirtzeh hashem they both will be just fine!
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MaBelleVie




 
 
 
 

Post Tue, Jan 15 2013, 9:55 pm
Ashrei, I'm davening for you and your little boy- for your strength to get through this easily, and for his refuah shelaima bekarov.
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amother




 

Post Wed, Jan 16 2013, 1:12 pm
I asked bec my child has HLHS too.
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amother




 

Post Wed, Jan 16 2013, 1:23 pm
amother wrote:
I asked bec my child has HLHS too.


how old? are you part of Yametz Libecha?
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RachelEve14




 
 
 
 

Post Wed, Jan 16 2013, 1:59 pm
Refua Shalama.

My baby had open heart surgery at 5 days old. It was a very difficult thing to go through, but B"H he recovered quickly and is a happy, healthy, 6 month old today.
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curlyhead




 
 
 
 

Post Wed, Jan 16 2013, 3:13 pm
We need a CHD (Congenital Heart Defect) Support thread. There is quite a few of us with kids with it - they say 1 in 100 have CHD. . It would be helpful for those who are going through it now and recently diagnosed.
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amother




 

Post Wed, Jan 16 2013, 3:19 pm
My child with HLHS is 8. like ive mentioned before, I was surprised that there was no CHD thread bec it is more common that you think.
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amother




 

Post Wed, Jan 16 2013, 3:36 pm
Children's Hospital in Philadelphia has an excellent heart center. Not only a top facility with top surgeons, but amazing support staff (social workers, other doctors, etc.etc.etc.) They care for the entire family not just the child. Dr. Rychik grew up in a frum home in Brooklyn and he knows exactly where you are coming from.

I wish I never knew this information, but unfortunately I do. I daven for all our precious children with CHD.
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amother




 

Post Wed, Jan 16 2013, 9:58 pm
CHOPS in Philadelphia is amazing but unless its something very major it isnt worth the shlep to there.
We used Dr. Quagebar (Dr. Q) in columbia. He is amazing at HLHS and also other major heart conditions.
but it usualy depends on the diagnosis who the best surgeon will be and not every great surgeon is great at every surgery in that field.
So check out which surgeon/Hospital is best for YOU!
Unless someone here has info on your sons specific diagnosis, I'm sure YL will be able to help you better with this.
Hatzlochah!
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amother




 

Post Thu, Jan 17 2013, 12:02 am
I went to follow up a heart murmur for My 6 yr old daughter and the doc found something else too. they call it PDA. Ductus arteriosus is a blood vessel that is supposed to close at birth and by her it didn't so the doc wants to do surgery on her to close it, we will prob do it at Mt Sinai. I have been recommended to dr love he is supposed to be a great Jewish pediatric cardio. Hope everything works out well
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Ashrei




 
 
 
 

Post Thu, Jan 24 2013, 9:57 pm
Amother above, who recommended you to Dr. Love? Just wondering how ppl find their doctors.

UPDATE -- We met Dr. Meyer, and he discussed the surgery with us. He uses a smaller incision than most doctors, making the surgery 'less invasive.' He specially trained in this technique at NYU. For my son's condition, which is relatively common, most of the teaching hospitals will have residents perform the actual surgery. Also, the larger cut is preferred only so that it would be easier for attending surgeons to show the residents how to perform the surgery. (It's hard to see in through a smaller opening and watch what's happening). Something to think about with Columbia...

The doctors and staff were all very accommodating and addressed our concerns about using a doctor no one else has used, so we are deciding to go ahead with this surgeon even though we weren't recommended to him by someone in the community. With Hashem's help, it will be a great surgery.
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Ashrei




 
 
 
 

Post Thu, Aug 29 2013, 7:16 pm
I just got a PM regarding this thread, and it occurred to me to update it in case anyone was following it... DS had the surgery at Columbia Pres after all, on May 20th.

There was an amazing emergency heart transplant that morning which pushed his surgery off to the afternoon. This is hearsay, but the heart transplant was on a frum Jewish little girl who was in dire need. Her's and my son's surgery went off without a hitch.

It was a great week of recovery and support. Baruch Hashem, he continues to develop normally and is followed by a cardiologist infrequently. Btw, we switched cardiologists to Dr. Marans in NJ.

For anyone with a more serious heart defect, my 'heart' absolutely goes out to you. I understand what it's like to have a child who is regularly medically involved, and a simple atrial septal defect such as this DS had is, mamash, a big bracha in many ways. I continue to thank Hashem for this experience and beseech him to give a refuah to my son's brother and all the cholei in klal yisroel.
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amother




 

Post Thu, Aug 29 2013, 7:51 pm
amother wrote:
ds had surgery in columbia at a few months old. dr bascha is a terrific surgeon there. I don't remember the recovery being particularly hard because they only send you home when you are able to care for the baby on your own. there were frequent follow ups that were hard though. try to get some support like meals from chai lifeline (call them, they were so helpful!) and meals at home from family and friends. take all the help you can get-cleaning babysitting etc... I hope all goes well and he should have a refuah shelaima!!!

ditto, I wonder if I met you in the picu over shobbos...
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Merrymom




 
 
 
 

Post Thu, Aug 29 2013, 8:09 pm
Would you like us to have your son in mind when making challah this week and particularly erev Rosh Hashana?
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amother




 

Post Thu, Aug 29 2013, 8:33 pm
Is there a forum for children with CHD on IMAMOTHER?
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Ashrei




 
 
 
 

Post Thu, Aug 29 2013, 10:17 pm
Someone should ask Yael about a CHD forum, unless it should go under special needs...? It's been mentioned a few times on this thread alone.

My son who had the surgery is not in danger, but I appreciate your offer to daven for him.

My other son, could use your kind tefillos - that his bladder should be healthy, and his hips, hamstrings, and calves should get stronger and develop healthy. He'll be 2 between Rosh Hashana and Yom Kippur. His name is Akiva Tzvi ben Rivka Devora.

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amother




 

Post Thu, Aug 29 2013, 11:58 pm
Would love a CHD forum as I have CHD myself.
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RachelEve14




 
 
 
 

Post Fri, Aug 30 2013, 1:12 am
amother wrote:
Is there a forum for children with CHD on IMAMOTHER?


I wish we would have one. I knew nothing about CHD before my son was born.
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Merrymom




 
 
 
 

Post Fri, Aug 30 2013, 11:23 am
Ashrei wrote:
Someone should ask Yael about a CHD forum, unless it should go under special needs...? It's been mentioned a few times on this thread alone.

My son who had the surgery is not in danger, but I appreciate your offer to daven for him.

My other son, could use your kind tefillos - that his bladder should be healthy, and his hips, hamstrings, and calves should get stronger and develop healthy. He'll be 2 between Rosh Hashana and Yom Kippur. His name is Akiva Tzvi ben Rivka Devora.



What a cute picture, he's adorable kay"h! He should have a refuah shelaimah b'karov.
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amother




Teal
 

Post Fri, Jul 02 2021, 9:37 am
Ashrei wrote:
I just got a PM regarding this thread, and it occurred to me to update it in case anyone was following it... DS had the surgery at Columbia Pres after all, on May 20th.

There was an amazing emergency heart transplant that morning which pushed his surgery off to the afternoon. This is hearsay, but the heart transplant was on a frum Jewish little girl who was in dire need. Her's and my son's surgery went off without a hitch.

It was a great week of recovery and support. Baruch Hashem, he continues to develop normally and is followed by a cardiologist infrequently. Btw, we switched cardiologists to Dr. Marans in NJ.

For anyone with a more serious heart defect, my 'heart' absolutely goes out to you. I understand what it's like to have a child who is regularly medically involved, and a simple atrial septal defect such as this DS had is, mamash, a big bracha in many ways. I continue to thank Hashem for this experience and beseech him to give a refuah to my son's brother and all the cholei in klal yisroel.


Which dr did you use for surgery?
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