just found out: 2yo ds needs heart surgery!

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Just found out: 2yo ds needs heart surgery!

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View latest: 24h 48h 72h

Ashrei

Tue, Jan 15 2013, 1:49 pm

This morning we took ds to a cardiologist bc his pediatrician heard a heart murmer, and we learned that we need to take him for surgery.

It would be incredible if we could get in touch with anyone who has gone through heart surgery with 2 year old. We need to enter the world of pediatric cardiovascular surgeons, hospitals, and treating a 2yo after surgery... Does anyone have this experience? Would you mind contacting me?

das

Tue, Jan 15 2013, 1:53 pm

Theres an organization in Bklyn run by a woman whose child had heart surgery specifically to provide such support.I'll try to find out the name,maybe a diff Imamother knows it.

lucinda

Tue, Jan 15 2013, 1:54 pm

no advice but support: wishing you all the koach and support possible - it should go smoothly and you should feel HKBH being openly good to you. refuah shleima

StrongIma

Tue, Jan 15 2013, 1:54 pm

how scary - RS!

amother

Tue, Jan 15 2013, 2:34 pm

Been there. Sent you a PM.

amother

Tue, Jan 15 2013, 2:40 pm

I pmed you also. Im surprised that there is no thread on this topic.

ElTam

Tue, Jan 15 2013, 2:48 pm

You might try posting on the forum for children with special needs. A lot of children born with Downs syndrome have heart issues and require surgery.

HaShem should give you much strength to deal with this challenge and send your dear boy a refuah sheleima.

Sherri

Tue, Jan 15 2013, 3:00 pm

Refuah shelaima!

rae gi

Tue, Jan 15 2013, 3:14 pm

Refuah Shelaima. Chazak!

Dovi'smom

Tue, Jan 15 2013, 3:25 pm

Name of above mentioned organization is Yametz Libechu. Will try to post the contact info soon.
Refuah sheleima! Keep strong!

IMHopinion

Tue, Jan 15 2013, 4:59 pm

Ashrei please go for a second opinion.
Many people live with a heart murmur, and they are perfectly healthy.
I hate to give medical advice, but please don't do anything without consulting more drs.

My daughter was born with a heart murmur, my ped said it might disappear on its own, and it did b"h.

Yameitz Libechu is a wonderful organization. They've helped hundreds of people and can definitely help you too.
The number I found on google for them is 7184862895.

Good luck.

QUEENY

Tue, Jan 15 2013, 5:07 pm

My ds had heart surgery at 2. We had it done at mount Sinai, thats what my insurance paid for..some people prefer Colombia. He had excellant care there. The recovery period is very quick for children thast young. He had the surgery on Tuesday, came home Friday and we took him to my friends upsherin on Sunday.

Liba

Tue, Jan 15 2013, 5:12 pm

IMHopinion wrote:

Not all heart murmurs are the same. Some are benign, they cause no issues and go away on their own. Some are cv"sh a sign of something much more serious.

I assume that the cardiologist did an echo and knows what he is talking about. A second opinion might make sense, but the fact that your child had a heart murmur and was fine without surgery is totally irrelevant to OPs child's condition.

IMHopinion

Tue, Jan 15 2013, 5:14 pm

Liba wrote:

IMHopinion wrote:

Of course not. My child's condition doesn't show anything about hers.
I do believe she should get a second opinion though.

flowerpower

Tue, Jan 15 2013, 6:06 pm

Many times the heart murmer goes away by a year old. If its past that age then its more serious many times! Hatzlacha rabba op!!!!!! Contact that orginazation- they have a lot of experience!!!

amother

Tue, Jan 15 2013, 7:38 pm

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!!!

Ashrei

Tue, Jan 15 2013, 8:59 pm

Thanks to everyone for chizuk and advice! Will definitely get in touch with Yameitz Libechu, thank you for the info on that.

My son has an Atrial Septal Defect - a hole between the two upper chambers in his heart. The cardiologist this morning did both a sonogram and an eccho cardiogram. In the sono, I saw it with my own eyes. I didn't rule out getting a second opinion offhand, just because I try to be thorough like that nonetheless. But I figured I'd meet the cardiovascular surgeon and get the opinion from him.

I hear about Columbia Presbyterian a lot, and I have a lot of experience in that hospital with another child (see babyboynyp.blogspot.com), but no experience with heart-stuff, and our cardiologist (Dr. Presti here in BK, he won awards and what-not, I have a lot of confidence in him) would have preferred we go to LIJ Cohen's Children's Medical Center on LI and do the surgery with Dr. David Meyer - in case anyone has info on him.

But I will keep the other doctors mentioned in mind as we call YL and others.

Thanks again, I knew I could count on the imamother community for so much support. I'll for sure keep you posted.

amother

Tue, Jan 15 2013, 9:14 pm

It was very weird to come on to Imamother to give out some extra tension from my hard day at Columbia presytrian to see this post about my ds!?!

Happy to see that the details are a bit different and no-one is writing things out of my mind!! Phew!!

So today at a follow up with ds cardiologist he said that ds will need another (unexpected) heart surgery Sad

He already had 2 (expected ones) and was only supposed to have 1 more when he's almost 4 but after a few back and forth weeks/months they decided that it really has to be done now Sad

I cant tell you what your ds surgery/recovery will be like cuz each one is different but it usually goes by pretty quickly. The last one my ds had done on wednesday and came home on sunday almost back to his regular self.
Hatzlochah and let us know when to daven for you.

amother

Tue, Jan 15 2013, 9:21 pm

amother, does your son have HLHS?

Ashrei

Tue, Jan 15 2013, 9:24 pm

oy, amother, I feel for you! It seems difficult now, but, Be'ezras Hashem, your ds has a bright and healthy future to look forward to once you get through this!

So we both got some cardiovascular surprises this morning! whew what a day!

I have spent a month at Columbia with a different child, and go often as an outpatient. There's a lot of holy energy there, with all the heartfelt davening that goes on there for our precious neshamalas. I'm sure your son is benefiting from the kedushah.

B'soros tovos!

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