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Im glad i didnt listen to my sons Dr "UPDATED"

Posted by on Apr. 18, 2013 at 2:42 AM
  • 18 Replies
1 mom liked this

So this is the story of my baby boy elias. 

He was born perfectly healthy nothing seemed wrong, but he had a hidden disease we didnt know about. And this is where our story starts.

My sons is now 8 months old but lets go back 2 months to his 6 month old checkup. Dr Ryan Tolley does all the normal stuff check his hieght, his weight all his measurements then he checks his heart and notices a murmur. He says to me have they ever mentioned him having a murmur im like no they never said anything to me. He then goes on to say its probably nothing, he will most likely grow out of it but i dont suggest it i can still give you a refferal to see a specialist Dr. Hrair A. Garabedian. I almost listened to Dr Tolley and said dont worry about it but something in my heart told me to do it. so i think 2 months later 4/15/13 he sees the specialist the dr listens and confirms he does in fact have a murmur a small hole between his right and left valve he will grow out of it. But then he does the ultrasound just to confirm its what he said and thats where we fight the scary stuff out. The Dr Hrair A. Garabedian comes in and holding a paper with a picture of a heart on it with 3 areas circled

and he says your son is going to need surgery and this is why, he was born with double congenital heart disease he has 3 problems going on one he will deffinetly grow out of and not need a surgery for he has a hole between he RV and his LV. then he has a double pinched left aorta meaning both sides are pinched causing less blood from from the heart to the rest of his body more serious to his lungs and legs. (which is why i have always noticed my son having a hard time trying to stand and also his legs and feet are cold all the time even with socks and shoes on also he gets very fatigued playing alot) the other problem which we cant fix right now he will have to wait till he is around 1 1/2 maybe 2 years old when his heart i bigger so we can fixed his narrow left valve because if there is a complication there we dont have artificial valves small enough to replace and he would have to be put on bypass which could cause serious complications.

so all we know right now is he needs heart surgery we are waiting to hear back from the surgeon and my sons primary physician which again im glad i did not listen to because i would not have found these problems out and if my son had started to try to walk and got more active it would of caused alot of strain and caused his heart to fail the dr explained. he said i saved my sons life


so a friend helped me make this website its CHD website and made a donation button for a fund for eli to pay for gas to his heart apts because they are 3 hrs away and for diapers and just for eli this is the website


so the date for Eli's heart surgery it will be 5/3/13 or 5/9/13 we will have an answer tomorrow, it will be at sacred heart childrens hospital they will be doing a Coarctation of the aorta repair surgery cutting away the part of the aorta that is double pinched and then stitch it back together and thats it simple and fix and they have high hopes for him

by on Apr. 18, 2013 at 2:42 AM
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Replies (1-10):
by on Apr. 18, 2013 at 2:49 AM
Good luck. I had to have open heart surgery after I was born to close a pulmonary duct in my heart due to being born at 24 weeks gestation.
by Member on Apr. 18, 2013 at 2:53 AM
I am glad you went with your gut instinct. Praying for your little boy.
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by Member on Apr. 18, 2013 at 2:55 AM


by Member on Apr. 18, 2013 at 11:29 AM
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by on Apr. 18, 2013 at 11:51 AM

Mother's instinct is best.  I hope everything goes well.

by Member on Apr. 18, 2013 at 11:52 AM


by JoAnna on Apr. 18, 2013 at 12:35 PM

mother knows best

by Member on Apr. 18, 2013 at 12:48 PM

Wow!  I'm glad you listened to your mommy instinct and took him to the specialist.  Hopefully the surgery goes well and he'll be on his way to a full recovery and a long, full life soon.

by on Apr. 18, 2013 at 2:16 PM

Good luck to you.  I am glad that you didn't listen to your doctor and went with your gut instinct.  Mama's intuition is a powerful thing.

by Melissa on Apr. 18, 2013 at 2:41 PM
My middle daughter dani had 2big holes in her heart when she was born she was born right at 34wks she was in nicu the doctors never told me til a nuse with a nursing student said something do you her the mumar i said what the nurse was like the doctor never told you i said absultly not she said ill get him so he tells me when we finally get to take her home after 8wks she had to see the peds. cardo. there in tallahessee florida he check her ran some cardo test on her explain to me with this sisution we have keep and eye on it anyways as she got older and more playful remind yall she is see the peds.cardo every six months she would get tired easliy she rested often. then we ended up moving to northern maine because dh got a very goid job there and is still there got her astabish with doctors and her peds.cardo.dr. met us the first tume ran test says look i understand what the doc. said down there but in my opion and what I've seen she needs surgery he explain to me and showed the devuce that will be used by this time dani is 4yrs old and of coyrse id said lets rock make my dd better after sugery she was better she is ten yrs. old and you can't tell she has had anything wrong with her she is entergetic and so on hun your baby will be find my GOD be with all of you good luck and hope my stoty does give you hope
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