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Name: Worried Father
[ Original Post ]
My unborn daughter was recently diagnosed with this heart defect. I am looking for other parents of children with this heart condition to talk with.
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Name: momo | Date: Mar 24th, 2008 5:24 AM
Hi thee..I am a regular to babycrowd..My name is monique i have two boys 1 year and 5 years..Rylin is 5 and was born with a CAD..He has Critical pulmonary stenosis, Epstiens anomoly, and ASD. He has had 2 caths surgeries and 2 open hearts so far..His last surgery was to replace his pulmonary valve..Which means he will now have to have surgery every 5 -10 years for the rest of his life..

It has been a battle, but one thing i have learned from all of this is that. i was given a gift. I think having a child with a heart defect gave me a different outlook on life. i dont know if i would have been able to appreciate being a parent as much as i would have. I dont know if i would have seen just how truley precious life is..

I will tell that i didn't know my son had it until he was born blue..then they had to resucitate him..i went through a grieving process..The why's..the blaming..the how come's..it took awhile to come to term and relize this was the way it was ment to be..

Dr's said my child would never do this..he would never play sports..he would never be active..He may be smaller than most kids his age..but i will tell you what..he is so active..and siince his last surgery..He plays t-ball..He can run 1.5 miles straight without stopping..He can ride a bike 4 miles without training wheels in one straight shot..things they said he could never do..he is doing..

It may be a long battle..It may be a hard battle..An emotional one..but i will tell you something..It is a battle worth fighting..In the end we have such precious time with our children..whether it may be 1 day or 50 years..every day is one day longer that we had more with them..and every day we our here for our heart babies is precious..

If you would like to chat feel free to email me at [email protected] am fairly familiar with how the whole system works..and can answer any questions you may have..or if you just want to talk..

good luck..and may peace be with you 

Name: TK | Date: Jul 31st, 2008 4:07 AM
We have a three year old who is in great shape now. She had her first surgery at 6 days old. Her conduit was a little kinked after about a year and she had catheterization but ended up replacing the conduit anyway. That was nearly 2 and a half years ago. We are hoping she can make it to age 5 or so before her next surgery. The subsequent surgeries are inevitable but we are incredibly thankful that she is ALIVE and well! What a pistol she is. She does everything that one would hope a 3 year old would do---and MORE! By keeping a good eye on your child (and NOT worrying--'cause you have to live) you should be okay:-) 

Name: Richard | Date: Aug 19th, 2009 2:02 PM
Hello Worried Father what condition was your daughter born with? 

Name: mommychick | Date: Nov 23rd, 2009 11:26 PM
Hello, I'm new to this forum so I don't know how long ago you posted this. I had my son September 11th 2009 and at 4 weeks of age he was diagnosed with truncus arteriosus type 1 with an interupted aortic arch, I would love to be in contact as it's difficult to find other parents raising children with truncus arteriosus, good luck with your baby, look forward to hearing from you. 

Name: Kaitlyn Hines | Date: Mar 4th, 2011 2:58 PM
I am turning 19 years old and from birth I was missing a part of my heart and suffered from this disease. My life has been a battle. If anyone needs to talk to someone with this problem I am hereI take Coumadin and will for the rest of my life. I have had 4 open heart surgeries and many more other types of surgeries. I live in Canada. 

Name: I[3Ciel | Date: Feb 20th, 2012 6:53 AM
my gf has this 


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