Congenital Heart Disease Support Group

I have a 6 month old daughter who was diagnose with a complex heart defect in the womb also. She had open heart surgery when she was 4 months old, and will require more. I dont know exactly what you are dealing with and the specific defect, but I can tell you that the docs and surgeons can do amazing things for babies with heart defects. My baby is normal and does normal things of a 6 month old. Just a thought, and if I were you, I would certainly register for baby things. Keep hope and educate yourself on the defect. Thats your and your baby's best advantage. Ask as many questions as you need to feel comfortable and informed from the docs. Thats their job. My baby's card told me that because of my persistance in asking questions and being informed, my baby is thriving and doing well. Babies with heart defects can do really, really good, depending on the defect. I know that probably doesn't help you very much, but I just wanted to try to give you some hope. I know how scary it is though. Please contact me with a message or something if you have any more questions or anything.

Hi,
I too found out about my sons heart defect while he was in the womb. What helped me during this time was researching about his defect, and reaching out just like your doing to others with heart babies. Little one's are resilient, and surprise their parents every day. Keep hope, go ahead register for baby things. Get a good support system in place and be prepared to fall deeply in love with your little one. Some of your fear will lessen once you see your little one, and some of it will be more real. I can't tell you that I'm not scared every day, however I wouldn't change a thing. My little guy hasn't had his surgery yet, and he is doing much better than what they had told me to expect. Stay strong and good luck on your journey! Feel free to message me any time..

Hi, my name is Diane and my granddaughter will be born around Christmas with the same type of defect. I have been to a couple of support groups for CHD, one called littlehearts.org is very good. If you wish, check out the littlehearts newsletter. There is a very normal happy little guy playing in the bathtub. He had two of the three surgeries and was doing great.
Most of the people I have talked to say they or their children are doing great. Some HLHS kids are going to college now.
I,too worry about Kylie's future but we have to realize that nothing is promised. Most sites say we have an 85% chance with the first surgery, 90-95% with the second and third. If you want, contact me at my home page DiRN, or email me at diane.stowers@hotmail.com
love, diane